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.

Nothing to Complain About

I’m writing this blog post from my ophthalmologist’s office – I’m sitting in a chair in an exam room, waiting for my eyes to dilate so my doctor can complete the exam.

Just before my eyes were dilated, I checked in for the appointment and went over my information with a nurse who works here. During the check-in, she asked me how my eyes fared in the last year.

The chair from which I wrote most of this blog post – on my phone, to boot! (It takes time for eyes to dilate, okay?!)

“I have nothing to complain about, all is well!” I said to her.

“That’s great to hear. After all, after a year like we’ve had, it’s nice when there’s no complaints about something.” She replied.

I sat here in this chair and smiled under my mask. Too true. It’s refreshing when there aren’t any complaints about any aspect of my health and well-being, considering diabetes can be such a pill.

And I’m happy to report (now from the comfort of my own desk chair) that I have “gorgeous retinas”, according to my ophthalmologist.

Nothing to complain about, indeed.

My A1c Results are in and…

Before I left for my vacation, I had my (long overdue) annual physical with my primary care doctor. Like he does every year, he ordered bloodwork for me which meant that I had a whole host of health data to review on my online patient portal, including my current A1c.

When I saw that value up more than half a point from my last reading, my heart sank.

Now, I’m not going to say specifically what the reading was, because I’m a strong believer in keeping that sort of information to myself (and if you’re the type of person who shares their A1c, that’s okay, too – it’s just not for me). But I will say that it definitely isn’t the worst A1c reading that I’ve ever had, though it upset me because I think it’s the highest I’ve been since my college years.

Once it fully sunk in that this was my current A1c reading, like it or not, I started thinking about the why. Why have I gone up? I could think of a few factors…

  • I haven’t been eating super healthy; rather, I probably eat too many sweets that cause my blood sugar to fluctuate more than it ideally should.
  • The pandemic has changed a few things about my daily lifestyle – I don’t get out of the house as much I used to because I work from home, which means I’m in very close proximity to my kitchen and that gives me too many opportunities throughout the day to snack.
  • I get lazy and don’t bolus for “small” snacks (i.e., snacks with 10 carbs or less).
  • On the subject of laziness, I’ve been really bad about “eyeballing” my plates and portions lately when it would obviously behoove me to measure out my food and study my nutrition labels.

So those are the things I could think of that are the likely culprits behind my dissatisfactory A1c. As I sat and stewed over them and chided myself for my carelessness, though, I also tried to gently remind myself that A1c is only one measure of blood sugar “control”: I told myself that I need to bear in mind that my overall time in range is something that I should study and try to learn from, rather than dwell on this narrow snapshot of my 90-day blood sugar averages.

This is as close as I’ll get to sharing my personal A1c/time in range metrics… 😉

Using my Dexcom Clarity app, I learned that my time in range was suffering. I prefer to spend 80% of my time in range, and lately, I’ve fallen short of that goal. So after studying the amount of time that I spend “high” or “very high” (high blood sugars are always more troublesome for me than lows), I started to get a clearer picture of what was going wrong for me and what I might need to do to fix it.

This whole exercise, as bummed as I was to have to go through it, is going to serve as a great reminder to me that whenever I get disappointing news about my diabetes management, the best way to cope with it is to study the facts that I quite literally have available to me at the tips of my fingers. I know why my A1c is where it is, and I also know now the areas in which I need to improve. And that’s something to be grateful about and use as a motivator so that I can improve both my A1c and my time in range.

I know I can do it – I’ve done it before and can’t wait to feel that triumph over my diabetes.

From Patient to Medical Student: My Journey with Diabetes Treatment – A Post by Konstantina Taki

This post was written by Konstantina Taki and it was originally published on the T1International blog on June 8, 2021. I’m sharing it here today because the journey from patient to medical student as person with diabetes has always personally fascinated me. Despite my interest in medicine, I’ve never actively pursued it as a career (and probably never will), but I appreciated learning about Konstantina’s experience. Thank you, Konstantina, for sharing your perspective!

Having lived with type 1 diabetes for more than 12 years, I have experienced different aspects of the condition. First of all, as a patient, I approach diabetes from a personal view. I can also understand how the condition affects parents of children with diabetes. It’s something new, demanding and difficult to handle. The last five years, as a medical student in Greece, I have seen diabetes from yet another more practical and scientific perspective.

The world of medicine is a marvellous, enormous one. It is a multifaceted science. When I started studying medicine back in 2016, I had a completely romantic approach. I was convinced that the core of medicine is the purpose of making people’s lives better. I believed that healthcare systems were patient-centered and every decision or strategy was made in order to ensure that people’s lives were safe and to improve their health. It was a challenge for me to realise that even in such a human-centered domain, there are motives and decisions which aren’t really altruistic. Instead they are often led by powerful companies.

“Inequality in treatment of people with diabetes should come to an end.” – Konstantina Taki

Over the course of time, I had to face the fact that pharmaceutical companies influence healthcare systems in such a way that healthcare professionals almost have no control. For example, a lot of medical research is funded by the pharmaceutical industry, or ‘Big Pharma’. So how can we ensure that the outcome of research is unbiased? The vast majority of medical seminars and conferences are also sponsored by Big Pharma. This means that organisations who want to support medicine without pharmaceutical industry support struggle in terms of fundraising. Healthcare systems, and the people leading them, tend to lose their purpose of saving people’s lives and improving the health of patients. Instead, they take advantage of people’s health to make profits.

Type 1 diabetes is a non-preventable chronic illness, and its successful management depends on insulin. Without insulin, a person with diabetes is in danger. Insulin belongs to the category of essential medications. I believe pharmaceutical companies take advantage and exploit this situation. Unfortunately, many patients, including those with diabetes, deal with the effects of Big Pharma’s politics and strategies. Having read articles, and later discovering T1International, I saw the process of how the profits of pharmaceuticals cause the loss of human lives. In 2021, people with diabetes still die of their inability to access the only drug that keeps them alive: insulin.

Your money or your life. This is a dilemma that seems to have deep roots in medical society. I am lucky, and I feel safe due to the fact that in Greece this phenomenon doesn’t occur as much as abroad. However, I did experience this dilemma personally in my Endocrinology appointment. In the examination room, there was my doctor, a nurse and a sales manager from a pharmaceutical company with diabetes products. The whole appointment was led by the sales manager. She was focusing on the weak points of my blood sugar throughout the session. Her aim was to convince me to start using a continuous glucose monitor (CGM), which at the time wasn’t distributed for free in Greece. Once I understood that she was trying to get me to use and pay for the product, I tried to focus on my diabetes management without discussing the CGM. The doctor was indifferent. She didn’t seem to be bothered by the sales manager. I ended up arguing with them and then I left the room.

Access to healthcare is an unquestioned human right for every person, which includes the need for medication and technology. Given the fact that the production and distribution of medication diabetes technology can provide extreme amounts of profits to companies, people with low or even no income are therefore excluded from healthcare systems. So who is being served by healthcare systems? Patients or profits? And how could all those profit-maximizing strategies come to an end or at least decrease?

Being able to approach diabetes as a patient but also as a medical student, and hopefully as a medical doctor in a few years, I have mixed feelings. I undoubtedly want to see a change. From a humanitarian view, I strongly believe that no human life is inferior when it comes to health and medicine. People should be treated equally, without discrimination or undue pressure. If there is one thing that medicine has taught me is how vulnerable we are when our health is at risk. In addition, I acknowledge that my awareness for this phenomenon is a result of the realisation of the catastrophic effects my life would have if I had no access to insulin. Companies should not hold patients hostage – but it happens every day.

The reason I appreciate T1International so deeply is its scope to change this condition through raising awareness and advocacy. Inequality in treatment of people with diabetes should come to an end. Health care systems globally must turn into patient centered systems. It is a difficult and slow process but nothing is unachievable. #insulin4all isn’t just a trend. It is a need, a vision, and hopefully one day it will become a reality.

Reflecting on my Experience with Metformin

A couple of years ago, I wrote a blog post series about my experience with Metformin. As I was paging through my blog, looking for either an old post to republish or inspiration for a new post to write, I came across that series and got to thinking about how I felt on Metformin.

If you aren’t familiar with what Metformin is, it’s an oral medication that’s typically used to help stabilize blood sugar levels for people with type 2 diabetes. This is where you might be thinking…I (Molly) have type 1 diabetes, so why was I prescribed this medication?

Well, my endocrinologist at the time wanted me to try taking Metformin in tandem with doses of insulin in an attempt to reduce my overall insulin needs. She expressed concerns that my daily insulin intake was high (something I disagree with now, as I think about it a couple of years later), and that she had some general awareness of studies that indicated it might not be good for my future health if I continued using so much insulin each day. (Note: I don’t know what study or studies she was referring to, and this is where I should’ve done more research before just taking her word for it and going on the pill. This is an example of poor patient advocacy on my part.)

I did not enjoy my time on Metformin.

Even though I met her sentiments with skepticism, I trusted this endocrinologist, so I decided to give Metformin the old college try. And I hated it. Hated it! I tried taking it per my doctor’s instructions for two separate spans of time (each lasting a month or so) and made the decision to stop using it because I simply didn’t see that it was making any sort of difference. Actually, it was affecting something, just not my blood sugar levels or insulin intake – it was affecting my anxiety levels. I was afraid that Metformin, coupled with my insulin, would cause me to have low blood sugars all the time. While in reality, I didn’t experience many lows, I was still always paranoid about them and it was an unpleasant thing to have to deal with.

So now, about two years later as I think about these ineffective encounters with Metformin, I realize that I should have done a lot more before even considering taking it. I should’ve asked more questions. I should’ve done more research. I should’ve asked around the diabetes online community to see if anyone had advice for me. I should’ve pushed back more with my doctor to get to the bottom of the reason(s) why she wanted me to take Metformin. Going back to my point above…this was a big lesson in patient advocacy. It’s important to ask questions and gather all the facts, especially in situations like this where there was so much uncertainty, in order to receive the best care possible. And it’s important to remember that even the most trusted and well-liked doctors aren’t always right when it comes to the medical guidance they suggest or give. At the end of the day, I’ve got to keep in mind that nobody knows my body and brain better than I do, so it’s okay to challenge the authority of the experts (in a respectful, kind way of course).

My First Virtual Endocrinologist Appointment

My first-ever virtual endocrinologist appointment – and my first one of 2021 – took place last week. I’m going to sum it up list-style, because who doesn’t love a good bullet-point list?

  • It was strange. I didn’t think I would be weirded out by having my endocrinologist “in” my home, but it was freakin’ bizarre to see her face show up on the monitor that I do my day job from, that happens to live on a desk in my bedroom.
  • I had to wait to see my doctor. It took almost 10 minutes for me to receive my pre-appointment check-in call, and another five before my doctor actually joined. That felt normal.
  • We made a single change to my pump settings in the whole appointment. She suggested a solitary tweak to my correction factor. I’m not sure I agree with said change, but we’ll see how I feel about it over time.
Look, it’s actually me in the virtual waiting room! Smirking at the camera and everything! Thank goodness my doctor didn’t join at this moment…
  • My lab results were barely discussed. My doc mentioned that my cholesterol was a little higher than it was last time, and I unabashedly told her that this was probably because I hit the drink somewhat harder than I used to in the past (sorry not sorry, I like wine). I brought up my A1c and I said I was proud of myself for achieving it, and she just nodded, otherwise disregarding this data point.
  • We figured out which prescriptions I needed. When she asked about my supplies, I explained to her that Dexcom is no longer shipping sensors and transmitters to me directly and they want me to use another supplier called Byram (more on that in a future post). I asked if she could send my prescription to my regular mail-order pharmacy instead, and she obliged, telling me to double-check on the script in a few days to make sure it would go through properly.
  • It was just as short as they typically are. The whole damn appointment lasted only 15 minutes and 2 seconds…and we talked about me/my diabetes, specifically, for fewer than 5 minutes. We spent the rest of the time discussing our collective confusion over my COVID vaccine eligibility and my frustration over my postponed physical. It was both gratifying and dismaying to discover that she couldn’t understand why the state of Massachusetts considers me ineligible to receive the vaccine until the third (final) distribution phase, but I’m hoping that will change soon.
  • She wants to see me again in 6-7 months. My doctor ended the appointment by asking me to schedule an appointment in the August/September range, which seems so far away. I let her know I’d schedule it at a later date for a couple of reasons, one being that I have no clue whether I’ll want to go in person or do it virtually again, and another being that I really don’t know that I want to keep her as my endo.

That just about covers it. I’m not the happiest patient in the world – I’ve been uncertain about this doctor since I started seeing her – but for realsies, I’m glad that I trusted my instincts and requested a virtual appointment instead of an in-person one.

The drive would’ve been longer than the visit, and for me, that just doesn’t make it worth it.

A Postponed Physical and the Resulting Questions

“Molly, we’re calling to inform you that your 10 A.M. appointment for this Thursday has been canceled. We still aren’t taking patients in the office and we won’t be rescheduling you until April. Please give us a call back so we can set up a new appointment time.”

I listened to the voicemail twice before it sank in that my primary care doctor’s office was calling me to postpone my annual physical.

Why, exactly, did it get postponed? And how do I feel about it?

My doctor’s office called me two days before I was scheduled to come in…leaving me to also wonder why such short notice of the cancellation?

Well, I can only theorize the answer to the first question. I’m certain that my doctor’s office is absolutely overwhelmed with phone calls and appointments…and they’ve probably been like that for the past year or so. I’m guessing that they’re only keeping appointments with higher-priority patients that absolutely need to be seen…someone like me, a pretty healthy (discounting my diabetes) and younger individual, is likely not very high on the list of patients they want to see. Plus, even though I know they’re doing virtual appointments for medical questions as they come up, there probably is no purpose in doing a virtual physical because there’s only so much they can do via video call. So I get the postponement, but that doesn’t mean I’m happy about it.

My annual physical is the doctor’s appointment for me, the one that I have each year that I know won’t be a total waste of time. Each year, I get my blood work and urinalysis completed at this appointment, as well as an EKG to monitor my heart. I also get to go over any general health concerns I have with my PCP, who is very thorough when explaining things to me. During this particular visit, I’d hoped to talk about (what I believe to be) the stress-induced hives I’ve experienced in the last month, but now it sounds like I won’t have the chance to do that until April.

But I’m also wondering…when I go to the appointment in April, will I receive my COVID vaccine then, too?

I messaged the doctor’s office to find out and learned…nothing helpful:

I believe by that time you should qualify for the vaccine so you should be able to get it. This of course depends on if the state has given us the vaccine. We will know soon about that and will be sending information to all our patients. 

Uhh…according to the multi-phase vaccine plan outlined by the state of Massachusetts, I should be eligible for the vaccine prior to April. (But quite frankly, the whole phase plan has been a bit of a hot mess. I’m just glad to have 2 out of 4 immediate family members vaccinated at this point.) And the “if” there? Definitely unsettling.

I have so many questions: Can they postpone again in April? When will they be able to tell us more information about the vaccine? Do they think that it’s safer to wait in April because there will hopefully be more vaccinated individuals overall then? Or are they actually worried about vaccine distribution and don’t want to clue anyone into that?

So I feel not-so-awesome about having to wait three more months to check in with my PCP. I take my overall health very seriously, not just my diabetes. One thing has everything to do with the other. However, I do have a virtual appointment with my endocrinologist in a few weeks…maybe that will be the health check-in that I’m desiring?

I’m not banking on it, but I’m hopeful.

On a Scale of 1-10, How Satisfied Are You with Your Health Insurance Plan?

The title of this blog post is a question that I was asked on a phone call with a member of my healthcare team. And the answer to it really stumped me.

On the one hand, I am extremely grateful to be employed with a workplace that offers a few choices in terms of a healthcare plan. I know that there are many Americans who are not as lucky as me and either struggle to afford medical care as needed or lack a job and/or health insurance altogether. It feels selfish for me to complain at all about my health insurance because I should just feel lucky to have it, period.

If you were asked this question, how would you answer it?

On the other hand, I’d be lying if I said I was 100% satisfied with my health insurance plan. I pay a lot of money out-of-pocket to cover the costs of all my diabetes supplies. I try to help mitigate the expenses by contributing to an FSA account, but it doesn’t do anything to lower the actual costs of my supplies: It just means that I save an amount equal to the taxes I would have paid on the money I set aside.

So when I was asked how I’d rate my health insurance plan using a scale of 1-10, 1 being the worst possible plan and 10 being the best possible plan, I didn’t know which side of the argument I should go with. I know that I certainly don’t have the worst plan – for the most part, I’m able to freely choose things like which insulin pump I want to use and which doctors I want to see – but I definitely don’t have the best plan. To me, the best plan would mean I don’t pay anything for the medications and supplies that I need in order to live, so I absolutely wasn’t going to give it a 10 rating.

Ultimately, I answered the question by giving my health insurance plan a 3. I am dissatisfied with the amount of money that I need to pay and wish that my plan would shoulder more of the costs, but the plan earns a few points for the flexibility it gives me in terms of who I see for doctors and for being consistent in the last couple of years that I have spent on it.

As I said the answer out loud, I couldn’t help but think and dream about the day that I might be able to give a health insurance plan a 10 because it covers all medical costs, is easy to understand, and provides freedom to choose any medications, devices, and doctors that I want. It’s a hope that I have not just for myself, of course, but for all Americans.

I hope that day comes sooner rather than later.