My Endo Broke Up With Me

Break ups…they’re hard not to take personally. Especially when they aren’t done in person, face-to-face.

Phone calls are worse. But letters are the worst. Breaking up with anyone by sending them a letter in the mail removes all emotion from the equation. But I suppose there was no other way for my endocrinologist to end our doctor-patient relationship than via a vague, impersonal letter that wasn’t delivered just to me, but all of her patients.

That’s right…my endocrinologist broke up with all of us and informed us in a letter that she was leaving her (well, OUR) endocrinology office.

So long and farewell, endocrinologist…

She’s officially gone from the practice that I’ve been going to for nearly half of my life now, and I’m not going to lie, her abrupt departure shook me a bit. It’s not that I’m going to miss this doctor – I was never a huge fan of her bedside manner or approach to my concerns with my diabetes care. It’s more so that I’ll miss the convenience of traveling to this particular clinic, as well as the familiarity I have with all of their processes.

And it’s even more so that this situation is forcing me to face something I’ve been in serious denial about for quite some time: I need to prioritize finding a new endocrinologist that actually understands my wants and needs, and break out of the cycle of complacency that I’ve been stuck in all my adulthood.

It’s a daunting prospect and a reality that I’ve been trying to accept as I’ve gotten older and as my needs have changed, but real talk? Shopping around for a new doctor is exhausting. It’s just as bad, if not worse, than dating. You read about a person online, get your hopes up that they’ll be a perfect match, make plans to pencil them into your schedule, and then when you finally meet them…you’re disappointed. Wash, rinse, and repeat until you make a genuine connection with someone. Only the stakes feel higher in this situation because a doctor plays an integral role in your overall health and well-being.

So while it’s far from fun to find myself on the search for a new diabetes provider, I can still find a silver lining in the scenario. And that’s the belief and optimism that there is a doctor out there who will become a reliable and supportive player on my diabetes care team. I will find someone who is not located too far away, and who is kind, caring, compassionate, and knowledgeable when it comes to all things diabetes.

I’ve just got to have faith – and a little patience as I pour time and energy into the process.

Unsteadily Stable

“Molly,

Your labs are stable. A1c is just slightly higher.”

This was the ultra-concise memo that my endocrinologist sent me post-appointment.

Nothing about this note was shocking, but somehow I’d deluded myself into thinking that my doctor’s analysis of my diabetes management in the last six months would be…I don’t know, a little more personal? Maybe contain congratulatory sentiments or words of encouragement?

Words of encouragement may have been more helpful in getting me to tip the scale and feel steadier about my diabetes management…

After all, I’d told her during our appointment that while I didn’t have any specific diabetes concerns to discuss, I did have a strong desire to improve my management. I know that I’m doing better than I was, say, at the age of 18 or 19, but as I grow older I become more acutely aware of the things that I could improve upon with my diabetes care. I acknowledge and accept that it’s up to me to be accountable for taking steps towards progress, yet I do rely on the input from my healthcare team in order to come up with realistic ways for me to make said progress. So naturally, I felt a slight tinge of disappointment when we discussed and agreed on a single, minor tweak to my basal and bolus settings before parting ways, with plans to see one another again in six months.

I couldn’t help but feel…that’s it? That’s all that I got out of this appointment? I suppose I’m feeling a bit jaded about it because it was my first time seeing my endocrinologist in about a year, since she had an extended leave of absence. In the time since I last saw her, I’d had a couple of appointments with the nurse practitioner who she allegedly works closely with, and I guess I had assumed that the NP would update my doctor on how I’m more determined than ever to take steps to achieve more time in range.

Now, I realize more than ever that I can only rely on myself to convey my thoughts and feelings about my diabetes to my healthcare team. Now, I realize that while my labs indicate my diabetes “stability”, my attitude towards my diabetes is the opposite.

I’m calling it…unsteadily stable. I’m doing fine with my diabetes, but I know that I am capable of doing better and feel like the path there will be a bumpy one.

Another way of putting it? I’m like one of those children’s roly-poly toys – I’m a little wobbly in terms of the goals I have for my diabetes management, but I certainly won’t let it cause me to fall down.

You Should Feel Empowered to Advocate for Yourself and Your Diabetes

This was the message conveyed to me after one of the best endocrinology appointments I’ve ever had, at least in my adulthood.

I’ll confess that I was nervous going to my first endo appointment of the new year. I didn’t know what to expect as I wasn’t bringing any specific concerns with me – besides the fact that I was upset about a conversation I’d had with a different doctor regarding a separate issue.

After the nurse practitioner and I exchanged pleasantries, she sat down at the computer screen that was displaying my record and asked me what I wanted to discuss during our appointment.

That’s when it all came flooding out.

I babbled about how I didn’t have anything in particular I wanted to talk to her about besides the fact that I got a very discouraging message from a doctor who told me I needed to have better control over my diabetes, and that this was infuriating to me because 1) not all of my health concerns can be blamed on my diabetes and 2) it was disheartening to be told by one subset of my health care team that I’m doing great with an A1c of around 7, but to hear from another subset that I’m not doing great and need to work harder. Once I finished my train of thought, I braced myself for a less-than-favorable reaction.

But that’s not what I got.

I’m really glad that nobody walked into the exam room as I was taking goofy selfies like this.

Rather, my NP asked me to explain my concerns in greater detail. She sat, listened, and told me that she disagreed with the comments from my other doctor’s office. It was validating to hear someone who actually does work in diabetes reassure me that, for starters, my diabetes might not necessarily be to blame for any other health issues I was experiencing. She also made me feel better about my A1c and that my track record proves how hard I’ve worked over the years to maintain a 7 (or below) and that it’s not indicative at all of a lack of control over anything.

Best of all, when I sheepishly admitted to her that I’d been embarrassed to write in about the health concern in question, she reminded me that I should always feel empowered to advocate for myself and my overall wellness. It was an incredibly powerful message for her to convey to me, seeing as my self-doubt had manifested itself in full-force over this whole interaction with the doctor’s office. And it’s a message that I plan to carry with me to future doctor’s appointments to help ensure that I do stay on top of my health to the fullest extent possible, while also making my voice heard.

At the end of the appointment, my NP turned and said to me that I’m an inspiration. While I don’t exactly agree with her words, I can’t remember the last time I left an appointment feeling truly understood as a patient living with type 1 diabetes. That’s what’s inspiring to me…the fact that a physician took the time to recognize the hard work it takes to live everyday life with T1D. And the discovery that my A1c has dropped by .3 to a level that I’m very proud to have reached – well, that’s the cherry on top of my first endocrinology visit of 2022.

I Finally Had an Endo Appointment, and…

…and it went well. Much better than I anticipated, both to my surprise and delight.

I’ve written here and here about my long overdue endocrinology appointment and my struggles deciding whether or not to pursue a new doctor. I eventually settled on taking an appointment with a nurse practitioner at my current endo’s office (mostly because I wanted advice from a professional sooner rather than later).

But my expectations for the appointment were low. I was doubtful that the NP would take the time to listen to, let alone address, my concerns. Fortunately, she proved me wrong.

My appointment – and the NP herself – really exceeded my expectations.

After we introduced ourselves to one another, I opened up to her that my previous appointment with the endocrinologist had been disappointing. I’d like to think I was gentle but brutally honest in my approach: Using kinder words than this, I explained to her that I felt like my last appointment was a waste of time and that I disagreed with the doctor’s assessment that I was doing just fine with my diabetes management. My sentiments were met with sympathy as the NP let me vent to her about where I felt I was lacking in terms of my diabetes care in the last several months.

The appointment lasted roughly 20 minutes or so, and by the end of it, several things happened: 1) I was given a new test kit and test strip prescription (I told the NP that I distrust my Livongo meter and want a reliable back-up for when I’m not wearing my CGM), 2) I had a referral to see a podiatrist due to concerns I expressed about my feet, 3) We agreed on a minor tweak to my correction factor that will hopefully help eliminate some mid-morning highs I’ve been experiencing, and 4) We set up a follow-up appointment with one another to take place in 3 months in addition to an appointment 6 months from now with the endocrinologist to make sure all of my bases are covered and I don’t have to go so long without seeing a doctor for my diabetes again.

I can’t remember the last time that I felt so heard by a diabetes clinician (or even any kind of clinician).

As the appointment concluded, I told the NP that I’m the type of person who relies on accountability in order to stay on top of my diabetes, and this appointment was the exact sort of accountability wake-up call that I needed to hold me over for the next few months until my next one.

And I daresay…thanks to the affability and receptiveness of this NP, I’m actually looking forward to our next visit in early 2022.

An Endo Update

So I’ve got an update on my whole I-haven’t-seen-my-endocrinologist-in-8-months situation.

It’s not exactly the update I was hoping for, but it’s one that I believe just might push me into making some positive change around my diabetes care.

As it turns out, my endocrinologist is on leave and not taking appointments until February 2022, at the earliest.

What’s even crazier than that February 2022 wait time? The fact that I haven’t been at an in-person endo appointment since 2019.

I found this out after contacting her office and receiving a message back that I could either wait until that time to see her, or I could schedule an appointment with a doctor at a different location that the office would suggest to me.

At first, I wasn’t sure what the right move was. I was almost certain that I couldn’t (and shouldn’t) wait another 4 months to see someone about my diabetes; after all, I’ve been unhappy with my management for most of this year. But even though I have been similarly unhappy about my relationship with my current endo (it’s practically nonexistent), I admit that I felt fear over the prospect of seeing someone new because any other provider would only know me based on the information available to them in my records. In other words, they would only know me based on numbers, not based on who I am and my personal diabetes management style/beliefs.

So I sat on this news for a few days as I pondered whether or not to take this as a sign that it’s time for me to find a new permanent endo, despite the mere thought being incredibly daunting to me.

During my pondering period, I happened to get a call from my endo’s office that wound up making my mind up for me.

They called to let me know about an available appointment with the nurse practitioner who works closely with my endo – an appointment that I could get this week.

I hesitated for a moment (I really hadn’t anticipated getting an appointment before the end of the month) before agreeing to take the open slot. And I’m glad that’s what I decided to do, because 1) at least I can talk to someone about what I think I’m lacking in terms of my current diabetes management; 2) I might end up getting some quality advice that will redeem my endo’s office in my eyes; and 3) even if I don’t see eye to eye with this person, it will be the push I need to start actively pursuing a new endo that will more closely match my diabetes care style.

We’ll see what happens.

Way Overdue for An Endo Appointment

By chance, I was looking through some old lab results on my endocrinologist’s online patient portal when I noticed something.

I was (and still am, as of this writing) way overdue for an endo appointment.

The last time I saw my doctor was at a virtual appointment back in February – more than 8 months ago. This gap in time between appointments feel especially significant because most of my life with diabetes, I’ve gone to the endocrinologist 4 times per year. It was only when I started seeing this new endocrinologist (who I’m not a particularly big fan of, BTW) a couple of years ago, and it was at her suggestion that I dropped down to twice yearly appointments.

From the beginning, I haven’t loved that recommendation.

I’ve realized that I am the type of person who kind of relies on regular visits with my endocrinologist in order to keep my diabetes (and myself) in check. This doesn’t mean I actually enjoying going to see my endo – because who honestly likes to go see any doctor – but it does mean that I feel like there’s been a missing component to my diabetes care lately.

I guess I’ve just been too busy (traveling, working, trying to maintain a semblance of a social life) to slow down and really notice the absence in my diabetes care and management.

But what bothers me more is that my endo’s office hasn’t even tried to contact me to schedule an appointment. What gives?! The moment I knew that I was way past due for an appointment, I messaged their office, and I still haven’t received a response back.

So in addition to it being time for my endocrinology appointment, it may also be time for a new endocrinologist, period.

A Dis-Appointment: My Experience at the Endocrinologist

Welp, I had my appointment with my endocrinologist on Monday.

In sum, it was mostly an uneventful affair, considering the times.

Immediately upon arriving, I was asked to put on a clinic-provided mask and to sanitize my hands. I checked in with the receptionist and sat in a chair in the mostly-abandoned waiting area, taking in the fact that seating was reduced in order to maintain social distance.

A nurse came out to bring me into my exam room and she took my blood pressure (good) and my weight (let’s not talk about it) before leaving to get my doctor. I was slightly surprised that she didn’t check my temperature with a contact-less thermometer, but I decided not to second-guess it.

My endocrinologist entered soon after…and she spent all of 15 minutes with me. She said that she reviewed the information I sent her from my Dexcom, as well as data from my pump, and said she couldn’t really detect any patterns besides some lingering lows in the late mornings/early afternoons. Again, I found myself a bit bemused by this observation, because I hadn’t picked up on it. She decided to adjust my basal for the 11 A.M. to 1 P.M. window (I went from 0.9 to 0.8 units for those two hours) and then asked me if I had any questions.

She didn’t check my feet, listen to my heart, examine my thyroid, or review my labs with me…all things that I’ve come to expect from previous endocrinologists.

My mild shocks of surprise from earlier in the appointment turned into something else: As the kids say, I was SHOOK…meaning that it was absolutely wild to me that she was already done with me.

A Dis-Appointment_ My Experience at the Endocrinologist
Am I smiling or frowning underneath this mask? Given how my endocrinologist appointment went, I bet you can guess…

I expressed my dismay with my A1c – it had gone up a little bit – and she told me that I was “still under good control”.

I said that I was befuddled by my weight gain – I’ve been working out like a fiend the last couple of months – and she suggested that perhaps it’s muscle.

I asked if she could recommend any blood sugar meters to me – I’ve had the same one for practically a decade and I worry about its accuracy – and she said that I should try a new meter from the same manufacturer that’s supposed to hit the market “soon”.

For every question or concern I brought up in that short span of time, she had an immediate, unsatisfactory answer that made me feel like my concerns were being brushed away.

But the real kicker? I’m not seeing her again for another seven months.

SEVEN MONTHS?!

That’s right, folks. I went from having quarterly endocrinologist appointments for my first 22 years of life with diabetes to once every six months, and now in SEVEN months.

This means that I will have seen my endocrinologist once for the entire year of 2020.

That’s bananas to me, and a sign that my instincts from our first meeting were correct: This may not be the right doctor for me. I have no doubt of her intelligence or capability, but sometimes you just know when a given doctor-patient relationship isn’t the healthiest one for you.

The whole appointment – the brevity, the indifference, and the outcome – was almost enough to make me forget about my anxieties surrounding medical facilities during this pandemic…

…almost.

Luckily, that’s what face masks, Clorox wipes, several squirts of hand sanitizer, and a thorough hand-washing or five are for.

My First Endo Appointment of 2020

My first endocrinologist appointment of the year is coming up next week and it’s got me feeling allllllll sorts of emotions…

Anxiety. This tops the list because, well, I haven’t been to a medical office since the coronavirus outbreak started. My doctors have either asked me to reschedule my appointments, or I’ve been able to see them virtually. I know that my endocrinologist’s practice has many protocols in place now to make the experience as sanitary and safe as possible, but it still does put me on edge.

Fear. I’m afraid of what my A1c will be. Yup, I’m actually scared to know this reading that should, in reality, help me manage my diabetes better. I know, I know – the A1c is just one way to measure how well I’m taking care of my diabetes, the one number isn’t a total reflection of my “success”. But I can’t help but be worried that I’ll be disappointed by my results, even though I know I’ve tried my best in the last few months to achieve one that makes me happy.

Beige and Gray Minimalist Quote Instagram Post
Who would’ve thought that a simple follow-up with my endocrinologist would evoke so many emotions?

Skepticism. The last time I saw my endocrinologist was just a couple days after Christmas…and it was my first meeting with her. It was her suggestion that I return in six months as opposed to the usual three, which I thought was a little weird, but I just went with it. However, I’m now wondering if this was the right call, because how on earth is she even going to remember more than six months later? I’m concerned that we’ll spend most of our time catching up on things that I didn’t want to discuss during this important follow-up, but I’m cautiously optimistic that it will go better than I’m currently expecting it to go.

Curiosity. I’m HELLA curious as to what my doctor will say about my diabetes management in the last six months. Will she tell me that I’m doing a good job? Will she scold me? Will she take the time to review my latest lab results? Will she help to address my needs so that the next time I see her, I’ll have less trepidation over our visit? I’m very eager to find out the answers to those questions.

Listlessness. Perhaps the most unusual feeling I’ve had about this appointment is…lack of interest in it. I’m nervous about physically getting out of the house to go to it, and I’m wondering about the outcome of it, but the mere thought of going right now just isn’t sparking much of anything within me. I haven’t really thought about the questions I might ask her during the appointment; instead, the only thing I’m truly focused on is the logistics of getting there and actually sitting in the appointment. Otherwise, I’m just feeling a little tired when I think about it, like I’ve already gone and it’s drained me of my energy. This could be due to some burnout that I suspect I’m contending with at the moment, but for now, all I know is that unless I leave the appointment feeling positive in some fashion, then this whole “six month follow-up” thing just might not cut it for me and my own diabetes care and management routine.

The Surprise A1c

I started out 2020 with an A1c that surprised me. It was a good surprise: Anything under 7 is a win in my book.

I won’t specifically say what the number was, because I don’t really believe in doing that and I fear that it will invite unwelcome judgment and/or comparisons. But I will celebrate that achieving this A1c was far from easy. It’s required a lot of work from me in the last few months, which have generally been a very turbulent period of time for me.

It seemed like the “diabetes gods” were really testing me in the latter half of 2019. From a month of unexplained highs to random incidents of technology failing me, I felt like I was being put through the wringer. I felt like a failure on just about all diabetes fronts, and it seemed like my efforts to maintain my desired blood sugar levels were fruitless.

Hey, Handsome
More than one surprise came with an unexpected A1c result.

So that’s why I could hardly believe my current A1c reading. Maybe it seems even more impossible to me because I didn’t even get to discuss it with an endocrinologist. In fact, I never got to talk to my new endo (the one I may or may not continue to see) about any of my A1c goals. Doesn’t that seem kind of effed up? Shouldn’t my doctor want to know what I hope to accomplish, in terms of my diabetes, in the next 3-6 months?

In that regard, this A1c has surprised me in more than one way…it’s not just that I’ve managed to get here (really, I’ve managed to stay here, my A1c in the last 2-3 years has been right around this number), it’s also about how it’s more than just a measurement of my average blood sugars in a 90-day period…it’s a marker of how I feel, emotions-wise, about my diabetes. I never thought about it much before, but as I’ve grown older, it’s really become a sign for me as to whether or not I have my shit together with my diabetes. It can signify how I’ve felt about my diabetes in a given period of time, from the lowest of the low burnouts to the highest of the high determined and motivated.

Kind of crazy and yes, surprising, how a single reading can mean this much.

First Impressions: How I Feel About my New Endocrinologist

Last week, I wrote about how I had an appointment with my first new endocrinologist in about 10 years. I compared my thoughts and feelings about the whole thing to a first date: Many of the same anxieties are felt in both situations.

By now, I’m sure you’re wondering…how did the date go?

Well…I don’t know that there will be another one.

Freedom is the atmosphere in which humanity thrives. Breathe it in.
This blog post serves as a bit of an endocrinologist evaluation.

Before I dive into my appointment postscript, let me just clarify that my thoughts and feelings are just that. They’re my opinions on how my experience was with this particular doctor. That doesn’t mean that she isn’t a great endocrinologist; in fact, I’m certain she is. But I just don’t think that we are doctor-patient soulmates.

For starters, the appointment got off to a weird start because none of my typical vital signs were measured upon arrival. I’m used to having my weight, blood pressure, blood sugar, temperature, and heart rate checked at the beginning of every appointment. But this time around, the only thing that was looked at was my…blood pressure? It was kind of random, and I never got an explanation as to why nothing else was looked at by the nurse, but whatever.

The actual appointment with the doctor herself mostly went as I expected it to. We spent about 20 minutes together (about 5 minutes longer than I usually get with the endo) and I told her a little bit about my diabetes history. She offered me some advice on what to do about the high blood sugars my new inhaler was causing (more on that in another post) and checked my feet as well as my thyroid, just like my previous endo did at every appointment. But she did not check my eyes, and she also…did not review my A1c with me.

This was pretty huge, though not totally unexpected. I knew this clinic didn’t have finger stick A1c machines like the previous clinic did, and that I would have to come to the lab at another point in time to get a current A1c reading. But it was surprising to me that she just glossed over it, like it wasn’t super important at that moment. She didn’t even review my Dexcom/OmniPod/Verio IQ meter graphs with me, despite having downloaded information from all three devices. However, these weren’t the most shocking parts of the appointment.

What caught me off-guard the most is when she said that I could come back in six months instead of my usual three.

In my 22 years with diabetes, I’ve gone to see my endocrinologist every three months, no matter what. Some of these appointments were more like maintenance checks to make sure I was on track with everything, but other appointments came at crucial times for me in terms of improving my diabetes management. I asked the new doc why six months instead of three, and she said something along the lines of…

“Well, it seems like you have everything under pretty good control. And you seem in-tune enough with your body to know to contact us with any questions.”

That latter statement is true, but the former…I don’t know about that. How could she have this impression after talking with me for a mere 20 minutes? It was mildly alarming. I probably could’ve pushed for another appointment in three months, but I got the distinct feeling that I would’ve been rejected had I done so. As a result, I walked out of the clinic that day with another appointment set for July and a feeling of unease settling in the pit of my stomach.

I don’t know that I can wait that long to see an endocrinologist, and I don’t even know if I’ll want to see the same person again. I have no idea how she’d be able to remember me, for goodness’ sake, especially given the brevity of our first and only meeting (so far).

Among all these unknowns, there’s one absolute truth: I miss my old endo.