I have an appointment with my endocrinologist next week. And dear God, I do not want to go.
Here’s the thing: I know my A1c has gone up. Life got a little complicated over the holiday season, and I never managed to snag that Dexcom CGM like I had planned (although it’s still on my wish list). I have a pretty good idea of where my A1c is si
tting at right now and let’s just say, it’s not pretty. On top of that, I know what I need to do to manage my diabetes…
I’ve had better A1cs before. In the past, I’ve dropped more than a full percent between appointments. I know what I did to get there. I know that to tackle my diabetes properly I need to: test frequently, do my basal tests, exercise regularly and slowly step away from the Starbucks Marshmallow Dream Bars (or at least finally figure out how many carbs are in one!). When your job is writing about diabetes and when you’ve had diabetes for three-quarters of your life, after awhile, you just know what you need to do.
It’s the doing that is the problem. But that’s not even what this post is about.
For the past few days, I’ve been weighing the pros and cons of keeping my endocrinologist appointment. My main cons here are that: 1) altogether, a single appointment takes about 3 hours of my time (getting there, being there, and going home), and 2) my endo isn’t going to tell me anything I don’t already know (see above). So it seems like a waste of time.
The pros of going are… Well, there’s consistency. I’ve never skipped an endo appointment before in my life, and I feel like this could tarnish some kind of record of mine. Besides, I like my endo. She’s nice, and she never makes me feel guilty. She never judges me. But I also think that if I use the “Life is just getting in the way” excuse one more time, her head may explode. Or maybe my head will explode from saying it yet again.
I have never found that knowing my A1c result is much of a motivator. As much as I try to not to let it get to me, if my A1c goes down, I feel good about myself and if it goes up, I feel bad about myself. That’s not motivation, that’s judgment. Right now, my meter average is already making me feel pretty crappy, and having the final judgment of an A1c come down on me just doesn’t sound appealing.
It’s true that for me, finding out my A1c tells me whether or not my evaluation of my diabetes management matches reality. Meter averages don’t take into consideration things like post-prandial spikes, overtreating low blood sugars, or the dawn phenomenon, so if you’re thinking you’re doing great, your A1c will tell you just how accurate that is. But I know that I’m not doing great, and I don’t need a little slip of paper with a “bad grade” to emphasize the point.
While I’ve been thinking about the pros and cons of keeping my endo appointment, I’ve been giving more thought as to why we repeatedly go to the endocrinologist in the first place. Here are a list of reasons I created:
1) To find out whether or not you’re doing as well (or as poorly?) as you think you are (I’m doing as bad as I think I am, trust me)
2) To get physically examined — heart rate, blood pressure, feet (Possibly a motivation, though I’ve always done well on these parameters)
3) To discuss blood sugar management strategies, and discuss any new meds or devices that may be needed (We discussed what I need to do at my last appointment, and I, um… haven’t done them yet…)
4) To get emotional support and encouragement (My endo is great for this, but I get plenty of support from the DOC!)
5) Getting prescriptions for things (Most of my prescriptions I either already have, or my endo calls into the pharmacy)
Am I missing anything? What do you get out of an endo appointment? What makes it feel worthwhile? If you’ve ever felt like “calling in sick” to the doctor’s, but went anyway, I would love to hear what your motivation is. Because right now, I’ve got nothing…
A good friend suggested that I just reschedule the appointment for later in the Spring, to give me a chance to re-prioritize diabetes and then check in on my diabetes progress later. I can’t help but feel a bit guilty (there’s that word again!) for skipping out on my doctor’s appointment. Would postponing just be procrastinating on facing all the stuff I haven’t been doing — knowing that I’ll find myself in this exact same predicament in a couple of months?
I feel like I’m making a bunch of lame excuses, but I’m also wondering if there are times when a doctor’s appointment is actually less beneficial than advertised. Is playing diabetes hookie always a bad thing?
Update: Thank you all for your thoughtful comments! You made some excellent points and gave me a lot to think about. After giving it a lot of consideration, I decided to reschedule my endocrinologist appointment. I have it now scheduled for May 1st. You can look for another update in early May! Thanks again!
Living abroad (and without any insurance coverage for diabetes) has forced me to think about some of these issues. Before I left, my home endo connected me with someone she knew here in Rome, who said he was happy to take me on as a patient. Fast forward to now, six months later, and I still haven’t been to see him. And honestly, I think the 90 euros I’d save from the office fee is enough motivation to really keep me from going, maybe even at all in these two years. I’d much rather spend that money on, you know, supplies to keep me healthy.
Still, part of me feels guilty (!) about this, that it’s one of those “good” behaviors for a diabetic. I would love to know an actual, lab-tested A1c. A script for insulin usable at a pharmacy here would also be nice. But, I’ve sort of figured out what’s working for me right now, and honestly I think that’s all we can really do at a fundamental level.
All of that said, I think you have to do what’s best for you! Obviously, I can’t yammer on about how you should go when I don’t do it myself!
Good luck at doing what needs to be done to make things best for you!
I go through the same thought processes, often, when it comes time for the endo, the cde, the eye doctor (I cannot deal with eye drops), the cardiologist and the dentist (I’ve never made a dentist appointment that I have not rescheduled at least a couple of times). With my current team, it is helpful that I only seem the endo and cde 3 times a year combined (as compared to other practices I was in where it was 4x a year for the endo and 8-10 for the cde).
Lately, though, I’ve been keeping the endo and cde appointments. My endo and cde are not judgmental (and I’ve used the life gets in the way excuse many times, though usually it is something about a plate of cookies getting in the way) and sometimes they are able to see patterns that I do not see. I like the idea of the fresh set of eyes looking at the patterns (particularly when I have the CGM in).
The other two reasons I keep the appointments are (1) there is such a long lead time if I need to reschedule — 4-6 months usually and (2) more importantly, so much of diabetes care is about discipline and I am not disciplined enough in every day life, though my intentions are always good. Keeping the appointments gives me the feeling that I am least being disciplined in one aspect of my care, and it usually gives me a feeling of checking something off my list of things to do when it is done, and that is always a good feeling. Of course, I always treat myself to something tasty right after the appointment — since the next a1c is so far down the road, it won’t show up in my statistics.
I. Get. Every. Word. You. Wrote. And those of the comments so far, too. I get tired of making my “doctors’ rounds” – to visit the retina specialist, the podiatrist, the endo, the dentist, the gyn, the ________ (fill in the blank because there are more). Sometimes I just want to make an appointment w/an endo ONLY when there is something new and significant out that will make my care easier – or better yet – when a cure is there and I can act accordingly. Hey – I get the “guilty” part – but wish we didn’t feel that way. Just found a great CDE – and that has helped as much if not more recently than an endo appt. For heaven’s sake, we cannot help that our pancreases are not doing the job they should – so the pancreas should feel guilty! If the scientific world has not been able to yet come up with a cure yet, how can we expect to always do the things we should? I understand algorithms are involved, and the correct mix has not yet been designed – and our minds/brains are complicated, too – with physical, emotional aspects. At this writing, I’m devastated that my fave endo stopped taking patients to go into research. Who can blame him? It’s like settling into a romantic relationship when getting established with a new endo. The best one takes 6 months to schedule an appt. The intermediary one … haven’t developed a connection with. This … from me … who has had T1D 85.6% of my life. I. Hear. You.
Hi Allison, Nice to see you again here, and I am now following you on Twitter. Thanks for your eloquent synopsis of the mixed emotions, and complexities of this issue. SInce you asked your thoughtful questions, here are my answers. Your endocrinologist learns from you. By learning from you, she is better able to understand and treat her other patients with diabetes. If you opt out of seeing her, she won’t have the benefit of your voice, your challenges, your results – no matter what they are. The last time I went to see my endocrinologist, he shared the experience of another patient with me, that really shed some helpful light on what might be going on with my own results. If that patient hadn’t shared her experience with him, I wouldn’t have the benefit of the information. Other reasons to consider: Some payors require PWD to see their physician (An Endo or whomever they designate) in order to receive approval for certain benefits. One of the biggest benefits, IMHO, is to have the invaluable physical exam of all the stuff I don’t or can’t do myself, like palpate the thyroid, look at my eyes, etc.
I agree with everything you said in your article. I, personally, don’t
Have diabetes, but my 12 year old, my 20 year old, and my husband all have
type 1 diabetes. There are times when my 12 year old has an appointment and I cancel it due to the fact she is in school and I don’t want her to miss. She misses too much school as it is. She doesn’t want to go because it’s ” boring and takes way too long”. It does often take four hours for the appt when she has to see the whole team then get her bloodwork done. So, yeah, I do let her reschedule her appts occasionally. I wish they had some sort of incentives for
kids. That could possibly help them in deciding to go or not.
Even adults need incentives once in awhile ya know!!
I hear what you’re going through and feel ya on this. Living with diabetes for 30+ years, I get the guilt when I know what I should be doing, and end up doing something else. For me, the guilt comes from the consequences that could, and have happened. (Consequences in the form of complications) For me, I really strive not to postpone, because I know I procrastinate. I go to my endo 3x a year. He has suggested I come in every six months, but if I did that, I feel I would slack off. I generally go to my endo to 1. Of course, see how I’m doing 2. Get a physical check-up, like you mentioned. 3. Rx’s 4. Info about new products, I usually hear about & learn about new stuff from the DOC, but I like getting my endo’s medical opinion 5. Motivation. I get all the motivation I need from the DOC, they are truly wonderful, but my endo provides me with a different kind of motivation, I can’t explain it, but he does. Hope this helps…and no matter what you do, believe in your choice and know its the right choice right for you:)
I’m right there with you. But I know my upcoming endo appointment is quite possibly going to show a drop in my A1c…I hope, based on how I’ve been eating and exercising. I get the same thing out of my endo appointments that you get out of yours minus the rah-rah. I feel a visit to my medical team is more like a conveyor belt or inventory, First In First Out.
On the other hand, it will SHOW you what is going on. It will confirm that the Starbucks Marshmallow Dream Bar probably isn’t a good idea for anybody, not just you. And it will confirm your diabetes intelligence as you shake your head at your doctor agreeing with what she’s saying.
But will postponing MAKE you get back in line? Or will you say, “Hey, I’ve got three months. I can play for the first month and get it together the last 1-1/2 to 2 months.”? I say go and be done with this quarter. Then show to yourself and your doctor how much you do know and can keep in control the next quarter.
Love this topic! The easiest (or worst) thing I put off is the blood work since this is done at a separate lab. Also, up until this year, I had been living in two locations so cancelling a doctor’s appointment because I was out of town was oh-so-easy to do. Last year I was gone a lot and ended up taking a ONE year “vacation” from my endo and primary care docs while keeping and rescheduling dentist, rheum and optometrist appointments. Since I was moving away from my endo, I thought I would find a new endo. Hah! Every endo in my new area was rated 3 out of 5 stars! I ran back to my old endo (who is 6 out of 5 stars in mho!) in Jan. and they did a complete “over-haul” of me ( a looong appt.). He is now able to be my primary care, too, so that cuts down on two office visits a year. He does an in office HA1C which was still 1 point too high. I left his office so motivated to complete all of the tests and procedures that he ordered and I have! Though he had been letting me go 6 months without a visit, he does want me back in four months. Time to focus on my HA1C. As for you, if you post-pone an appt. it can tempt you to into the abyss of avoiding the doc (like me last year). However, I think we know our bodies quite well and though we are playing a little gambling game, it is sometimes nice to give ourselves a little break. Your post has motivated me to make my appt. in May and improve my HA1C by then (which is all about what I eat – I exercise, dose and take BSs very regularly but it just is too hard when your food includes too much banana bread, granola, chocolate chips…!). Good luck and improved HA1Cs for us all!
I think number 6 is accountability. Though there are certainly other ways to get that. Only you know if you’ll really make the changes you need to if you postpone the appointment.
I’m sorry you’ve got burnout, and I hope you find your way to a better place soon. (And that you drag me with you!)
Excellent, excellent post, Allison! (And so complementary with Abby’s post on Six Until Me today!)
Right now, I haven’t been to the endo since the end of October, but this is a non-self-imposed endo vacation–my endo’s on maternity leave, and she thought I’d be fine to just skip one of my quarterly check-ins. Like you, I’ve always had an appointment every 3-4 months, so this is a little strange…but nice, actually.
Around the time (end of December) when I would have been angsting a bit about having an appointment in a month and feeling discouraged about my results from the past couple of months (see: holidays), I was able to step back instead and start fresh, since it was still going to be another 3-4 months until my appointment. Getting that “second chance” before my next A1C result has been invaluable motivationally. Maybe my experience of this wouldn’t have been the same if the missed appointment hadn’t been a post-holiday-indulgences appointment, but maybe not.
maybe you could go and see if she can come up with a way to improve your BGs in one small simple step. Not jump to a 6.5 a1c or anything, but just one small aspect you can improve. I think we get overwhelmed sometime with controlling the whole picture when even one small step in a more healthful direction can make a big difference. I would keep it just for the sake of having consistent records of your other health parameters (BP etc.) And maybe being really open with your endo–saying that you need something really easy to work on–can help you brainstorm together. For example, I had a visit once and coming away, the only thing I was trying to improve was to get my BG in a better place before I went to bed. Even that is not necessarily simple.. Anyway, I’d keep it and go in with an open mind.
If you don’t want to know the A1c right now, just tell your doc you’d rather not know it.
As another Type 1, I agree with and/or can relate to most everything you wrote! Just last week, I also cancelled an appointment with my endo, whom I also love, just because I didn’t feel like dealing with the whole thing … from the hours off of work, to the co-pay, to hearing (directly or indirectly) that I need to do better. Sometimes I go along just fine and take it all in stride and other days, it’s just too much to bear and I feel overwhelmed with life. So, I cancel appointments and hide for a bit until I can bear it again. Then I move on and do the best I can with what the Good Lord has given me to work with!
Never, ever skip a doc’s appointment. Ever. I did that once. Not on purpose. I failed to notice my reminder, and the one time the office did not call to remind me, I wound up with a bone infection. Lost a toe. It wasn’t my Endo I missed, but you never know what you might learn by going. So never skip.
An endocrinologist functions as a motivational coach, accountability partner, teacher, as well as somebody to listen to how life gets in the way and help you get on track. He keeps abreast of the latest developments, and often can pick up a problem early. He/She can help adjust medications, and provide other forms of advice. Knowing and facing reality is better than not being aware of problems. My Dad had an expression :”When the Ostrich puts its head in the sand, he gets his ass kicked”.
Not to be contrary, but it may actually be a good experiment to skip this upcoming appt., as long as you can commit to going next time; and to taking some steps to address your mental and emotional needs that are keeping you from dealing with the big DB right now (like journaling, counseling, taking “me” time to do some self-nurturing self-care things).
I think the perfectionism of having never ever skipped an endo appt. since you were a child must be exhausting. A part of you sounds like it just really does not want to go right now. And maybe that part should be given some space.
You are obviously so not alone in this, Allison. I can relate (30+ years T1 – woot!).
Skipping one opens the door to skipping more.
I try to make ONE test before an appointment. Maybe I’ll fast for a day for a basal test, maybe I’l measure and weight all food for a day to verify carb ratios – some test to feel like I’ve done something.
I went into that dark zone of cancelling consecutive appointments for more than a year straight. Guilt/accountability is actually a reason to keep them. If you’ve done *nothing* to fix your sugars since the last appointment, maybe one more appointment with no changes/no data to show is what it’ll take to be more on the ball for the next appt.
Perhaps my case is a little extreme, but when I cancelled my endo appointment for the first time – for reasons similar to yours – I ended up not seeing him for 2 years.
I was surprised he agreed to see me when I “found religion” (that is, the switch went off and I resolved to be better at managing diabetes).
I’d say: Go. Just like brushing our teeth in the morning, it’s something we gotta do, whether we like it or not. Plus, in my mind, from my experience (and so it may or may not apply to you), once someone skips an endo appointment, it’s a slippery slope downhill.
But, YDMV.
Burnout sucks. If you decide to keep your appointment, ask your doctor to tell you one good thing she sees in your diabetes management. Trust me, she’ll find something. There was a time when I felt like my BS was all over the place. My doctor was able to point out to me that even on the crappiest of days, my lunch BS was always in range. Having him point out that bright spot was huge. If I could get lunch right, then maybe I could tackle dinner.
And to help with the Starbucks Marshmallow Dream Bar problem, their website claims its 43 grams of carbs. http://www.starbucks.com/menu/food/bakery/marshmallow-dream-bar?foodZone=9999
I think the only thing I really get out of my endo appointments is knowing my A1C. Everything else is kind of BS — I already know what I need to do, it’s just a matter of doing it. And usually knowing my A1C is not motivation to do better. (Though it should be.)
Quite a mix of responses here –all with valid points. It makes me wonder who is saying what…is the person a D or a parent of a D, a D medical person/educator, an A Type personality, a person with longstanding D.
I replied above about taking a year between endo appts. and lab work. I am a 38 year D, not an A personality. I am a lucky, “healthy” 61 yr old PWD. Though I find I can guess my A1C before it is tested, I know lab work is very important, even more so as people age (true for Pw/outD, too). We need to stay on top of things. I find that my labwork/endo avoidance does occur more often when my A1C is higher. This probably reflects depression and lack of motivation associated with higher sugars in my case…and lethargy breeds lethargy. Now that I am back on track with my appts. and have streamlined the # of docs I see, I am motivated. However, I totally understand “playing hookie” – been there, done that, not doing it now….but it will probably happen again. Take it easy on yourself…
Thank you for posting this, Allison. I had an endo appointment scheduled two months ago, around the time that my father passed away. The endo’s office actually called and asked me to reschedule, but I said I would call them back….and have failed to do so. I need to go because I am running low on a prescription….that and my fiance’s insistence that I go are my only motivations. The guilt hasn’t been enough for me in my 20 years of Type 1. Sometimes, we need a break, and that’s ok….and sometimes, we need to suck it up and take care of business. I’ll be making my phone call on Monday because that is what my gut tells me to do. Good luck with trusting your gut – and not feeling guilty if she tells you it’s ok to postpone this one.
I almost always feel like cancelling, but I go anyway for a few reasons, in no particular order 1) to avoid the guilt of procrastination 2) to avoid the guilt of carelessness – I let so many other diabetes things slide, I don’t want to add another one 3) I can renew my scrips and check in with the CDE about new gadgets 4) I’m motivated to be a good little diabetic for the week before and after. Sometimes it sticks. 5) I like my doctor 6) she reminds me to do things I’ve neglected – see the eye doctor, check my basals. 7) a physical exam is probably a good idea.
Go for it. Make it a day trip vacation.
Wow. All I can say is People With Diabetes Are Smart and Have a lot of Insight!! Allison – great post (and great comments). I love your honesty and your thought process.
I don’t skip or cancel appointments, however, what I find myself doing is not rescheduling the day of the visit. I tell the receptionist,”I’ll call you and schedule the next appointment,” and then a lot of time goes by before I call and then they are booking at least three months out, and so on. In fact, when I went last October, it had been 11 months. Interestingly, I scheduled my next appointment that day before I left (for January) and in January i scheduled for May. So maybe I secretly needed a break.
One thing that struck me in your post is that you don’t find motivation in numbers, which I’m sure is true for a lot of people. Maybe you could find different motivations – relationships, accomplishments, non-diabetes goals. Writing them down can help – and then working toward achieving those other things in your life may just lead to taking care of your diabetes.
OMG – I haven’t seen my own endo in a really long time! And I don’t even feel guilty about it. Until now, of course. I so should go in, for all the reasons presented. Thanks Allison!
I’m been bored with my diabetes management regimen. I’m in the same boat as you. I’ve got an upcoming endo visit — new endo since the last one just moved to Florida — and I know my A1C is higher than before. I’ve also got high cholesterol. I’m keeping the appointment because I need to renew my prescriptions and I want the endo to prescribe an insulin pump. I’m sick or lugging around two vials of insulin, needles, etc.
I have a wonderful endo who I see religiously, every three months. I had my blood drawn at her office this past week, expecting an A1C near to 6.5. I got a phone call back that it was 7.1 – one of the highest of my life (and my next diaversary in July will be my 40th!) That’s why this disease can drive a person crazy! I have not been slacking off – not a bit. Never gone without my sensor, never neglected to test my BGs. The only thing I haven’t been doing is writing my BGs down. I’ve just downloaded the Glucose Buddy app, and I hope this will help. I wanted to scream when I heard that 7.1!
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