Wednesday, May 10, 2006

Advice to Pediatric Endocrinologists: Grow Up

I am shopping around for a new endocrinologist. Its not that I am completely unhappy with my current endo. To be sure, he has been aggressive in being preventative about treating potential issues that many endos tend to let slide. He is a nice enough doctor, but regardless, I do have a few reasons for looking.

First, I'm getting tired of the fact that I need to schedule appointments a minimum of 3 months in advance to see him. While I understand that many doctors are booked well in advance, it seems to me that doctors should not have so many appointments scheduled that they cannot effectively address a last minute issue that might come up. For example, last year, I was on the verge of leaving for vacation and I realized that I was running low on lisinopril, the ACE-inhibitor I have been taking primarily as a prophylactic to preserve my kidneys since I've lived with type 1 diabetes for 30 years. While I normally order 90-day supplies of my prescriptions via mail-order, since I was leaving in a few days and was down to about 4 tablets, I figured I should just call my endo's office and get a script for both a mail-order refill as well as a single refill that I can have filled at the local Walgreen's to carry me over until I returned. That proved to be complete headache of repeated phone calls and messages with a less-than-cordial administrative staff, and it took 3 days to fulfill what seemed to be relatively simple request. These are the little things that suggest to me that a medical practice has taken on too many patients to effectively serve them all properly.

I have also discovered that although New York City is the nation's largest city and metropolitan area, there appears to be a relative shortage of qualified endocrinologists for a city of this size. I did not experience the same ratio of endocrinologists to patients in most other places I have lived, including Boston, Philadelphia, San Jose and San Francisco. In those cities, there were more doctors relative to each patient. True, I could trek to Connecticut or New Jersey for treatment, but that is more effort than I care to make for a physician I need to see 6 times a year.

There are some other things that I do not feel have been resolved optimally in my treatment, and I am hoping to find someone who may have a different approach to addressing some of these issues and concerns. I want an endo who is experienced with the issues unique to type 1 and will seriously consider new adjunctive treatments such as Symlin, and I also want a doctor who specializes primarily in type 1, since the published medical data indicate there some unique physiological issues affecting us which are distinct from the millions of people with type 2 (lets be clear: its not the same condition, even if it has a similar name). I also have an ongoing issue with hypoglycemia unawareness which cannot be resolved by simply living with slightly higher blood glucose levels for a few weeks (I've tried, and the symptoms do not restore themselves), so I need a doctor who is willing to make adjustments with this issue in mind. My current doctor tries, but frankly doesn't seem to have enough time to really work with me.

In my search, I have discovered that many endos in New York City who specialize in type 1 serve ONLY pediatrics (children), as if we outgrow type 1 diabetes just because we become adults. While there is no shortage of doctors who accept and treat adult patients with diabetes, most are focused on issues related to insulin resistance unique to type 2 diabetes. Frankly, I do not need or want skills related to weight management, blood pressure and blood lipids. Instead, I have found specialists who deal with children under 18 years, or doctors who focus almost exclusively on patients with type 2 but have not not taken or studied issues related to type 1 since medical school or even taken continuing medical education (CME) credits in the field of type 1. Many seem woefully unaware of even basic developments in the treatment of type 1, such as the role the hormone amylin plays in healthy metabolism.

Needless to say, the challenege of finding a new endo who fits my needs has kept me with the same one for longer than I might have otherwise in any of my former places of residence. Sometimes I feel as if adults with type 1 diabetes have been forgotten. My advice to endocrinologists: do not forget about those of us with type 1 by virtue of our relative scarcity (we still account for as much as 10% of all patients, and recent statistics indicate that most of us are not children). I would remind you of your hippocratic oath and suggest that some of you consider being less of a pediatric specialist, and more of a type 1 specialist instead for the benefit of your patients. The next time you treat that adorable 4-year old child who was diagnosed with type 1, just remember that he or she will grow up, but they will not outgrow their condition and will still need qualified endocrinologists who are current on the issues unique to type 1 diabetes. As JDRF likes to campaign: "Promise to Remember Me."


Kassie said...

I agree!

My endo isn't available after 4:30. If something goes wrong, it's off to the ER for me (at the only hospital in the area. Where he does not have any priveleges).

Recently, I had an allergic reaction and was given steroids. At 4:40 PM. I was on my own until the next morning as far as any advice on steroids and blood sugar.

I'm seriously considering getting back on the rolls at the Joslin Center, just for access to their on call phone numbers.

BetterCell said...

I am in total agreement with you Scott about ALL the issues you have raised. I am sure we both have encountered the facility Uptown that gives the "appearance" of being explicitly involved with Type 1 Diabetes, but in reality, prefers to treat Pediatric T1DM☜What Hypocrites!! If we are speaking of the same facility....I had told the nurse there, that your patients will also grow into adults with T1DM as well. I wonder what their charter says, since that facility was given much monies in the beginning by a family to serve those with T1DM. I have also become my own Endocrinologist minus the ability to write an Rx.

Scott S said...

I'm just thinking out loud, but it almost seems to me that there might be others who have experienced the same challenges; perhaps we can form a group dedicated to challenging the status quo because these issues are obviously out there, but have no one representing them to the medical community. I was also tempted (and still am) to sign up for an account with PR Newswire under the name "Diabetes Advocates" or something similar. This would enable us to make public statements that get fed directly into the major newswires.

A few months ago, there was a lot of news about yet another follow-up to the original DCCT which showed lasting benefit to cardiovascular health and a reduced incidence of stroke the closer to "normal" patients are able to keep their blood glucose levels. David Nathan at Joslin and countless others were touting the latest findings in the press, medical journals, etc. My reaction was the same as Deanna Stuart-Gaston's reaction to the original DCCT published back in the early 1990s, and she wrote an article in 1997 (more on her in a second):

"If it were merely a simple matter of keeping blood sugar levels close to normal, it would be similar to not being a diabetic, so, of course, it would reduce complications. But #1- it is virtually impossible to always maintain good control and # 2- as the study showed, it reduces, but does not eliminate complications. Did it really require $165 million to prove this?!?"

Anyway, my thoughts were "wouldn't it be great to publish a similar statement that got picked up by Reuters, AP and all the other newswires on behalf of patients with diabetes?" Yes, there is a cost, likely around $300 per press release, but it might be worth it to bring a sense of balance and reality to all of these countless statements that typically try and shift blame to patients.

Anyway, about Deanna, her website is still online at, but sadly, I read that she passed away in 2000 of a stroke. Still, her thoughts are in sync with many of us who live with this condition. Some ideas are timeless. Anyway, more to follow ...

BetterCell said...

In the future, we can have some Beck's beer, great pizza and discuss this further. Oh, I forgot the Novolog bolus shots as well.

Lyrehca said...

Scott--Elmhurst is in Westchester, right? I know of an endo in NYC who treats adults and is T1 herself. Email me and I'll pass her name along.

Scott S said...

I think you may be confusing Elmsford (Westchester) with Elmhurst (Queens) ... something I used to do also! However, I may be interested in your doctor referral, so I'll let you know. Thanks!

Lyrehca said...

Scott--Queens is even closer. My doc is on the upper east side.

Anonymous said...


Find anyone you like? I'm sick of the Uptown center mentioned above. If you wouldn't mind providing a recommendation, I can be reached at diabetic at