Joslin Center Endocrinologist Appointment – Time for a New Endo?
It's the dreaded Endo End alarm! This fictitious alarm may have gone off during my appointment today.
Originally, this post was going to focus predominately on my disappointment with having to switch back to seeing my endocrinologist at our local Joslin Diabetes Center. After leaving the Joslin Center roughly two years ago due to problems with Joslin not being able to respond to refill requests in a timely manner (it once took over two weeks), I started seeing my endo at her private practice in a nearby suburb. However, after switching from shots to an insulin pump in January, my endo suggested that I switch back to Joslin, because their staff is better trained to handle her pump patients (analyze pump data, read Carelink reports, etc). When I told her about my refill request issues with the Joslin Diabetes Center, she said that if I had any trouble I could just call her private practice and they would handle it. Okay, that works, I guess.
The refill issue with Joslin originally arose due to the fact that since my endocrinologist was only at the Joslin Diabetes Center one day a week, it was the only time she could sign off on refill requests; and if she was out sick for that day or on vacation, then it would take until the following week or longer. Well aware of this, the Joslin Center’s voicemail even states to allow two weeks for refill requests. However, this is more than lackadaisical with regard to type 1s, who often use varying numbers of strips and varying amounts of insulin each day, not including days of increased exercise, illness or a variation in diet. This was never a problem with her private practice, who would usually fax the refill request back to my pharmacy the very same day because she was there more often.
Unsure about what to expect this time around, my wife and I made the fifty minute drive to my Joslin Center appointment with my endocrinologist. We arrived ten minutes early, only to discover that the office had moved to another building on the hospital grounds. We made the short walk to the new location and hopped in an elevator to get up to the third floor.
“This hospital is kind of a dump,” my wife commented, pointing out the crooked number ‘2’ elevator button and the retraced lettering on the worn out occupancy sign. I couldn’t disagree. It was an older hospital that was certainly beginning to show its age, and with rumors of bankruptcy and a brand new hospital being built down the street, it’s likely only a matter of time before it has to close its doors.
The appointment started off well. In the exam room, a nurse brought in my CGM reports and commented that she had never seen such level continuous glucose monitor readings. “That’s great! It’s almost a straight line!”
When she left the room my wife turned to me, “That has to make you feel really good.” It did, even though the CGM levels were a bit elevated overall, which had been expected since I am new to the pump and still slowly raising my basal rate. After several minutes my doctor entered the room. She’s in her mid-fifties with dark hair and is somewhat overweight for her profession. She started into the usual routine – check my feet, listen to my heart and lungs, and study my blood glucose reports.
We then began to discuss the sheets in front of her. She made no mention of my near straight line CGM graphs that spanned the past several weeks. Apparently, they didn’t impress her. We instead began to discuss how I can lower my overall blood sugar levels, especially during the morning hours and at night. She made two small changes to my basal rate, which I had already been in the process of doing anyway.
As if she couldn’t already see from the data in front of her, I explained to her that I had been following a strict low carb diet, which is part of the reason I have had almost no recent bouts with hypoglycemia. She looked at me with a confused look on her face, as if she couldn’t understand why I would do that. “I cut out all breads and pasta,” I added, “the things that had been causing the spikes and large drops in my blood sugar.”
“Those types of diets can work in the short term,” she responded, “but they’re hard to stick with for very long.” Her face still looked a bit confused, as if I had just took an abrupt exit off the freeway that is her school of thought.
As we headed out of the exam room after the appointment, I peppered her with more questions, “I’ve actually been following the diet that Dr. Bernstein recommends in his book. Have you read his book?” I anticipated that her response would of course be yes, since Dr. Bernstein’s Diabetes Solution has been around for years and is one of the most well-reviewed diabetes books available, with online discussions and groups solely dedicated to it.
“No,” she replied. “I’ve never heard of it.” She added that she did read a different low carb book and that she herself recommends the South Beach Diet. “Such diets can be difficult to stick with,” she reminded me again.
I left my endocrinologist’s office feeling discouraged and a bit upset. Obviously, I wasn’t expecting her to agree with everything in Dr. Bernstein’s book, but to have never even heard of it? That was a surprise. I admit that I didn’t expect her to support everything about my current diet either, but to look puzzled when a type 1 mentions that they’re trying to adhere to a strict low carb diet, and then to dismiss it by saying that those diets are “hard to stick with”? Is it her position to discourage me from trying to adhere to such a diet, just because she thinks it’s too hard to follow? After all, she’s not the one who is faced with a future that could include potential nerve damage, vision loss, limb amputation, organ failure, increased risk for heart disease and strokes, in addition to the ever present daily fear of severe hypoglycemia. If she was faced with these things, perhaps then she would realize why “hard to stick with” is not an acceptable response. Perhaps then she would encourage me to do everything that I could to prevent future complications. Perhaps then encouragement would have been her only recourse.
My name is Kevin Lang and I am a Type 1 Diabetic who was diagnosed in May of 2004 at the age of 27. My last A1C was 6.0 in May 2015. I used to use daily shots of Lantus and Novolog to control my blood sugar until I switched to the MiniMed Paradigm Revel Insulin Pump in February 2011. To learn more about me, follow the about link in the menu bar.
If that doc won’t give you a pat on the back, I WILL!! That flat line on your CGM is SPLENDID! Do you know how few diabetics with either type manage to achieve that? I definitely agree with the low-carb — I’ve been doing it for 6 months, and it has made a huge difference, both in BGs and also in lipids. And it doesn’t matter what the studies say about people sticking to it — it matters that YOU can stick to it. You’re young, and motivated — why shouldn’t you have the best? As far as the pump, if you’re comfortable making changes by yourself, and willing to take the consequences (like lows when you have a basal rate set too high), maybe you just don’t need the supervision of this doctor. It’s YOUR body, and you need to be in charge!
it’s tough when your doctor is slightly overweight – it would make me question everything they said!
i actually had my endo appointment today, mentioned the bernstein book, and my doctor looked totally clueless too! how can my specialist never have read the book?? i even went in there ready to battle his anti-bernstein argument – i was fully prepared… but not prepared for him to never have even HEARD of him!
congrats on changing your diet – i’m finding it really helpful too!
I read this post with 100% sympathy. I recently tried another endocrinologist, hoping she would be open-minded enough to support the diet I KNOW works (and have the CGM reports to prove it). But I was disappointed. I wish there were a way to find a doctor who gets it. Or at least is willing to admit the possibility that some things they learned in med school may not accurately reflect how things actually work in the real world for type 1 diabetes patients. I wish you the best of luck. Thanks for this post–it makes me feel less alone. Solidarity! LOL