Sometimes, I just want to scream at my endocrinologist.
I’m not a textbook diabetic!
Don’t say I am “uncontrolled”… I’m living with diabetes every day!
No, I DON’T know why that number from three weeks ago was 400…!
I’m not checking my blood sugars as much because I’m burnt out, and it’s not like I can just flip a switch to make myself feel better!
The Diabetes Online Community understands… why can’t you?!
You just don’t get it, doc!
Some variation of these pretty much come to mind every time I visit my endo, which is typically every few months.
Ever feel that way?
You might say my endo and I have a rocky relationship. We don’t see eye-to-eye on everything, but she knows her stuff and is highly qualified to do what she does. And she helps me when I need it. Yet I am still frustrated… obviously.
I’ve been with this endo for more than five years now, after discovering her within a 10-minute drive from my house a couple years after moving to Indianapolis. That first year, I didn’t see the need to find an endo and went without one, just getting all my prescriptions from my primary care physician. The first endo I found was just 10 minutes from my then-workplace, but he was a complete “yes man” lacking the ability to be aggressive in helping me with my D-care, I thought. He simply agreed with everything I said, even telling me all was fine when I clearly wasn’t doing what was needed!
So, in finding Dr. P — a highly-coveted and respected endo in this area — I had found someone “better,” a doctor who at the time I felt was “good enough” for me. There’s a lot that I like about her: the fact that she allows for e-logging of BGs and doesn’t charge for in-office pump and CGM downloading, she can fine-tune a basal dose or bolus calculation like no other I’ve seen when she has the full picture, and her reputation in this field is stellar and tough to compete with. Oh, and despite how effective or ineffective the office visits are, we typically have about 17 minutes or more to talk.
These positives are tough to ignore, and they’re a large part of why I’ve stuck with her for half a decade.
But, for some time now, I’ve been feeling that I wanted more — and I’m not sure that “more” is something she can provide.
Put simply: she isn’t living with diabetes and that is what I’ve been searching for in an endo. I’ve wished for someone who is a fellow PWD, who “gets it” and doesn’t seem like they’re trying to fit me into medical textbook definitions.
As good as she may be medically, my endo doesn’t seem to embrace the concept of online peer support that I find so bene
ficial for PWDs on the “emotional side” of D-management. While she doesn’t dismiss it altogether, whenever I raise the topic and talk up the benefits I’ve found in the DOC and how this community has helped me, she just nods and smiles… before going back to focusing on the numbers in front of me and wondering how she can get me to “do better.”
To me, it feels like most the time we’re just trying to do the Endo Song & Dance with a metaphoric chasm between us.
More and more often in the past two years, I’ve found myself craving that understanding of a fellow PWD. This feeling came to light powerfully after a good friend and fellow D-blogger who’s also living with type 1 shared the story of how his awesome new doc actually read his blog and helped him feel better about his D-management.
That made me want an improved patient-doctor PWD-connection more than ever…
One person in particular was on my mind, but being confined to an office job and with him being a good 30-minutes away from my home and office, it just seemed too “inconvenient” when I had a decent doc nearby. The time just never seemed right. My motivation wasn’t there to seek out that change.
Until recently.
At the ADA Scientific Sessions back in June, it all started coming together at an evening event where I was meandering around chatting with friends, awesome advocates and industry leaders.
Suddenly, a familiar face appeared in front of me — that of a fellow diabetes advocate in Indy, who I serve on a local D-Camp board with and who works as a diabetes nurse and educator in my town. We greeted and I quickly learned that her husband was across the room.
Why does that matter?
Well, this man is a coveted endo here in Indy who happens to be a fellow PWD, living with type 1 himself since being diagnosed at age 12!
I’d come across his name a handful of times through the years and thought about reaching out to see if he was accepting new patients, but just never took the time to do that.
But now, this Philadelphia meetup set the stage. After returning home, I reached out and got some great n
ews: Despite the front office line of “not accepting new patients,” he’s willing to welcome me in as a new patient!!
I’m beyond excited about this, though there’s a little regret that I didn’t take the initiative to make this happen sooner!
Now, since we’re talking about my future endo and I’ve not discussed any of this with him yet, and because I don’t really see the need to ID him by real name, I’m simply going to refer to him as Dr. Understanding.
Because, you know, he “gets it.”
Obviously, this isn’t going to solve all my issues and make me “the perfect” PWD.
Having a fellow diabetic as an endo isn’t a magic potion that will lower my A1C or give me the ability to do everything right. No, I get that.
Most of my D-headaches and “uncontrolled” aspects come down to my own lack of discipline and willingness to do what’s necessary. My A1C isn’t as low as it once was (I got it down to 6.1% a decade ago and have hovered in the 7% range for years before slacking). And sometimes I don’t test or change my infusion sets often enough, or I fail on counting my carbs, because I just don’t care at that moment in time.
As my current endo and also my D-therapist Mind Ninja has told me: “It’s you, not the doctor or device.” Yes, I get that. There’s validity in saying that we patients need to see the situation from our endo’s perspective sometimes, and not just the other way around.
But the potential for understanding in having an endo with diabetes is strong, and I think that maybe we can get past some of the frustrations that come with us not looking at diabetes from the same perspective.
We can bridge the gap, so to speak.
What I need is someone who not only knows their textbook stuff, but someone who can be aggressive while also offering a high level of understanding for what my life with this disease is really like. I need recognition of the real struggles of I’m going through, that it’s not all about numbers. I need peer support, especially the kind of thing you find in the DOC. That’s an incredible resource that more folks in the medical community should embrace to help their patients!
That’s what I’m searching for. Maybe this new guy won’t be “the one,” or some cons may outweigh the pros at the end of the day… Who knows? We may not be the right fit. But least I’ll give it a shot (ha!) This just seems like the right time to take this leap and try something new… We’ll see.
Now I have to break the news to Dr. P. And get my medical records transferred. And take care of some long overdue lab work. And set up that first appointment. See? The change is forcing me to be proactive already.
I can’t wait for a fresh start. I will let you all know how it goes! Please let me know any experiences you may have had with your endo about “getting it,” and if you’ve ever had the desire or opportunity to have a fellow PWD in that role.
What do you look for when searching for a new doc? We’d love to hear about it
I enjoyed reading your post! Good luck with your new endo. I’m happy with mine. She is female, but not diabetic, and she usually books me for 1/2 hour of her time, every three months. I am an ultra-compliant Type I, who has lived with this disease for 40 years.
I may be opening a can of worms here (!!!) but I have always felt sorry for guys with Type I, for the simple reason that they don’t usually walk around with purses, the way we women do. Where do they keep that BG meter, spare infusion set/reservoir, and extra bottle of insulin, not to mention the glucose tablets or whatever snack food they need to have on their person?
Our society has traditionally taught men that they are invincible. I think (and I’m no psychologist, but I do have a brother with Type I) that it is likely more difficult, in some ways, to live with Type I if you’re a guy. I know that’s not the subject of your post (!!) It’s not easy living with it as a girl or woman, either, but I always wonder where guys keep all that paraphernalia!!!
Thanks for that comment, June. I’m excited about the switch. As far as carrying D-Supplies, I’m one of those guys who usually has my briefcase or laptop bag with me so I can carry my things in there. In winter, there’s my jacket. Can also put things in my suit jacket pockets. When driving, in my vehicle. During the summer when I’ll be out moving around for awhile but don’t want to carry anything, I have my keys with a quick 4 glucose tab holder and I clip my little black meter case to my belt on same side as my pump. Also, I’m blessed to have a wonderful wife who doesn’t mind carrying my meter and extra D-Supplies in her larger purse. Sometimes it’s a hassle, but most often I’m prepared for wherever the day might take me.
That’s how I carry my D-necessities! Thanks for asking!
Hello! I was diagnosed with Type 1 diabetes in Dec 1971! I was in the Army in Arizona and started losing weight and all the symptoms of uncontrolled sugars! Came home on leave and was put into a hospital with a fasting blood sugar of 1100 mg! I have had my struggles over all these years with our “enemy” diabetes! But with all these testing strips available and human insulin it is much easier to be aggressive with my controlling of this disorder! Because Im a Viet Nam vet i draw full Service Connected disability for my Diabetes! My Aic is always around 6.0 and after all these years manage my sugars well! No complications yet, but after all these years am still optimistic that I will lead a long life with Diabetes! With the tools we have now strips instead of urine tabs it is much easier to feel good and lead a somewhat normal life! Congratulations on your 40 yrs of Type 1! Play the “sugar” game well and u will do well! Take Care STAN
For me, REAL men aren’t afraid of the murse (or D-murse), the diabetic man-purse. It’s quite difficult to find a purse that has diabetes, but it’s worth the effort. The one I have now is about the size of Spock’s tricorder, so I have no idea where to put enough snacks. However, as a non-pumper, it holds my meter, my strips, my insulin pens, alcohol pads, candy for lows, menus from sandwich shops that won’t be named (about underground railway transit vehicles), nail clippers, earplugs, keys, pharmacological supplies, snack bars and still has room (for when I need it) my wallet and mp3 player.
And it has a shoulder strap. A manly, black shoulder strap. When pressed on the subject, I point out that my OTHER purse carries my lipstick. I frankly don’t care what others think, a purse is darn handy for diabetics of all persuasions. And very useful in reenactments of WW2 battles (for all you Monty Python fans out there).
The best endo I’ve ever had as an adult was a fellow type 1. He’d say things like “Why don’t you try X, though I know that won’t always be possible.” It was dreamy. The best a1cs I’ve ever had were when he was my doctor.
I strongly think that part of an endo’s job is to inspire us to try harder, which admittedly, is a tall order .
Lia has had the same endo since she was diagnosed 2.5 years ago (actually a PA not an endo). And though she doesn’t have diabetes, we liked her because she knew how to listen and would pay attention to what Lia was telling her. She didn’t have all the answers, not even close in terms of what a parent of a cwd wants to hear, but she did the best she could in the time we spent with her. It was, I suppose, a good relationship for us, the type of people just accustomed to learning and doing most things on our own, to include blood sugar management.
She is leaving the practice and a new lady (an endo) is coming on board and while I can’t say I am excited about the change—it’s more a case of managing my expectations—I would love to have the kind of dr for Lia who not only can talk specifics about diabetes, the girly stuff, and be on the lookout for trouble, but someone who can speak more directly and confidently about diabetes and lifestyle choices (fitness, nutrition, travel, etc). That, to me, is way more important than this quarter’s A1C.
Best of luck with the switch! You have come across some good d-luck in that find! I was thinking these same things the other day while I was in my endo’s office for my ‘yes your bloodwork is fine, see you in another 3 mos, 10 minute’ visit. Any idea where we can find those practicing endos with Type 1?
I wish you the best of luck with your new Endo! I have been type 1 for 12 years and am on my 6th Endo for obvious reasons, they were all terrible. I truly wish that all Endos were created equal in their understanding of our disease. My last Endo was a total whacko and wanted me to have an A1C of 5.0% at all times, anything less and I just wasn’t trying hard enough. Granted he was fresh out of school, I shouldve known. Endo’s need to understand we are not a textbook, we do not react or do what the book says, we are all totally different from one another. My current Endo is wonderful, I upload my pump and fax him my Dexcom data, he reviews it and call me himself to go over it! AMAZING, a doctor that knows how to use a PHONE! I hope that you love your new Endo and that he helps to attain the goals you are reaching for!
I’ve bounced around between a couple of endos over the past several years. There was one who didn’t seem to take the disease seriously at all. There was one that seemed to use his job as a doctor as a qualifier to speak about diabetes drugs. There was one who had literally nothing to add to my control – which thankfully has been excellent – other than to write me scripts. The doctor I’m with now is smart, insightful, encouraging and lets me know the areas where I can improve. But at the end of the day, I’m the only one who can truly control my diabetes. I have never blamed poor control – which has been very infrequent – on anyone other than myself.
I have been a type 1 diabetic for about a quarter of a century. I have been to Endo doctors. For the most part, they can run labs and write scripts. Other than that, they are just guessing, like we do on a daily basis, about what we need to do in regards to dosage of insulin.
You need an endo if you have problems. However, if you do not, except trying to control yourself better, you can figure it out yourself. There is nothing they can really do for you.
My experience, with living through this disease, is that so many variables impact blood sugar levels. For example:
1. When you inject or take insulin, your immune system is there to attack it. It is not always consistent in how effective it is which impacts blood sugars.
2. Activity level impacts insulin sensitivity.
3. Foods impact people differently. Foods impact the same person differently from one day to the next.
4. Foods do not always have consistent amounts of carbs. One handful of blueberries is not completely identical to another handful.
5. You liver rarely behaves. Sometimes it likes to spill glucose like a drunk. Other times, it does not. For example, every night, around 9 pm, I have to take 5 units of insulin to combat my liver. I have run experiments, where I ate no carbs after 12 noon, and I still require this dose. It has nothing to do with food. It has everything to do with the liver. If I do not take it, by 11 pm by blood sugar will be in the 200’s when it was around 90 at 9:00pm.
6. We have to deal with the dawn period where insulin is not as effective because the liver deactivates it. But this effect, the degree, is different from day to day.
7. We also have to deal with the body’s hormones which play around with glucose levels.
So, what doctor in the world has the insights to know how all those factors play out in your body?
Endo docs are a waste of time for me.
I will figure it out myself. I just need a primary care doctor to write my scripts.
[...] Don’t say I am “uncontrolled”… I’m living with diabetes every day! via diabetesmine.com [...]
As an endo who has been practicing for 31 years, I found the blog and the comments quite interesting and insightful. Part of the job of an endo is similar to that of all doctors who treat people with chronic diseases, to help their patients realize their goals and dreams, and to act like a motivational coach. I often struggle to find the line as to how far I can push somebody to have the best numbers they can have at a particular time. Some patients make it easier to find the line by letting me know how they feel and what struggles they have in their personal life. Others, do not want to share their struggles and want to concentrate on the numbers. Yes, nobody is a text book and care needs to be customized.
I have been an endo for 31 years and recognize a large part of my role is to act as a motivational coach. I appreciate your blog and the insightful comments. It is difficult to find the fine line where I push a patient to get the best control he can achieve without going over the edge and turning him off by pushing too hard. Each individual has their own level and needs which vary with changes in their lives. Some patients very willingly share their goals, dreams, and struggles, and I try to help them achieve them. Others are not as open, making it more difficult to find the line and to take into account their life situation.
Most of my life with diabetes thus far has been w/o and Endo. I have seen two Endos, one of which was terrible, the other is questionable at this point. I am compliant and in some cases I know about MY diabetes more than the Endo does. Basically all I need the GP for is to write prescriptions. I wish I had a doctor who had a decent understanding of what it is to live 24/7 with diabetes.
Dan
I am with you…I still see my endo, mostly because my GP has the personality of a stale legume. One appt I just laid that all out for him while stating that I have been PWD for 30 years, and you have been practicing for about 15. Who do you think is more well versed? Of course I was nice about it and he agreed.
And Mike H – we are the same kind of PWD, even though there will not be any Forecast articles about us, we are the true, full story of life with D.
Good luck to everyone riding the sugar dragon.
I understand your frustration and what you feel for your endocrinologist who does not seem to get what a type 1 feels and the burn out that comes along every once in a while. Of course one does not want a “yes man” endo who should be a little aggressive to find what fits a unique patient but some kind of understanding and a better bedside manner should be the order of the visit. And it is good that you can put your feelings in such an excellent post. How about those who can’t?
Of course, if one is not happy with his endo, he should find another one. For anyone who lives in Dallas, TX area there’s an excellent endo there by the name of Dr. Christina Bratcher who puts her patient on the right track. And her whole office will make you feel you are family. Quite a few people recommend Dr. Christina Bratcher with Diabetes America. One who lives somewhere else should try to google Diabetes America where he can hopefully find a good endo.
Hi Mike,
Yesterday is history and tomorrow is a mystery. Give today your best shot. Regarding a new endo, I have a great endo!~ Why, you see he lived with a diabetic wife. She was a type 1 diabetic and recently passed away. He lived the life of a diabetic. The line of diet, exercise and insulin sounds simple enough, until life strtikes you directly. Regarding June S. comment. I am a forty-six year type 1 diabetic and am very analytical. It’s the numbers and what can I do, right now to walk the walk and walk the talk. Regarding the stuff. I was at a medical center with my mother for her second round of breast cancer medication. One of the nurses reminded me that I had left my purse. So, I took the time to pull our a blood glucose meter, stripes, wipes, etc. it got very quiet. However, I have been successful is dealing with changes and can react for over 48 hours with the stuff I carry. Hope this helps and as always have a great day.
Dan
This goes through my head every time my blood sugar is below 65 mg/dL. I talked about lows with my endocrinologist a few weeks ago , and how when I’m excessively low (the ones that tangle my tongue in my mouth and leave cotton balls in the place where my brain should be), it’s very hard to measure out fifteen grams of carbs, then eat, and then sit patiently and wait for my blood sugar to rise.
I know Vince could relate to you and your Endo expierences. He had an Endo that would always talk down to him. No bedside manner. He is supposed to be one of the best in the Philly area, but they just weren’t clicking. He then began seeing his current Endo who happened to be trained by the other guy and this guy is great. Great at what he does and never once talked down to Vince in any way. And yes, I carry supplies in my purse for Vince too like Suzie
[...] month or so ago, I blogged about finding a new endo who’s been a type 1 himself for more than three decades. The status [...]
When my dad was diagnosed with type 1, he bounced from doctor to doctor. He said he was constantly frustrated with the lack of personability. Don’t feel alone, it seems to be a very prevalent problem. Somebody who has never suffered through what you are suffering through will never be able to identify.
There’s a big difference between “When one of my patients had a spike,” and “Whenever I spike…” It truly is a matter of feeling less alone or different.
My father and I both go to a great endocrinologist, with a primary focus on the thyroid. My dad is now completely off helping drugs, has it pretty much managed with diet and exercise. He’s a real inspiration to me.