What do you get out of seeing your endo?

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1

After my last–incredibly frustrating–appointment with my endocrinologist last week, I’ve started to wonder what exactly having a good endo would do for me…other than prescribe me my medication, of course.

At my appointment last week, I find out my A1c was 5.5. Which followed my last several of 5.7, 5.4, 5.3, etc, ever since I started my pump and CGM a bit over a year ago. Prior, my A1cs were in the 7s. The worst ever being 7.8.

Now I kid you not, I got lectured far, FAR less about my BG when my A1cs were in the 7 than now when they are in the 5s. Reason? He thinks I must be low all the time. Which is not true. Of course, it was hard to argue my case when I was 61 when the nurse checked it when I came in. This was the week my CGM sensors didn’t work and I was mega stressed out about it (I have new sensors now, and they work great!)

But he wouldn’t listen to me. He didn’t even remember I had a CGM, and by the end of it, I’m not convinced he even understands what a CGM is, despite me showing him the graphs in multiple appointments in the past.

Now I’m a far cry from perfect. I go low (who doesn’t!?); but I do not feel like my lows are out of control anymore. I also probably could eliminate some of my frustration with him by using Minimed’s carelink software regularly and printing out a whole ton of graphs and bringing them to my appointments. But I’ve come to realize all this would solve is my desire to be right. And maybe it wouldn’t even solve that.

Anyway, the second he walks in he starts babbling about some (idiotic!) study about where more diabetics died / increased risk of heart attack when their A1cs are at the levels mine have been. Never mind any possible flaw in this absurdly flawed study! He’s only brought this up every single one of my appointments for the past year. He also says the following when bringing it up: “Now this is mostly much older people, or type 2s…” Really? So it’s dogma to my situation how? Plus, how about instead of focusing on JUST the stupid A1c, we discuss actual daily fluctuations in my BG levels.

But this is never discussed in my appointments. He judges by A1c only. I tell my non-diabetic fiance this and he immediately responds with “isn’t A1c just an average? So you could either have a lot of swings up and down to make the number, or be steady to reach the same?”

YES. Ugh! He gets this! Why does my doctor not even think to ask about my numbers? Again, yes, I should and can bring graphs to my appointment. I suppose my frustration is in the immediate response to lower my insulin doses and get my A1c up to 6.5 without so much as asking me what my actual numbers are like. He says I should really be 120 to 140 2 hours after meals instead of 100.

But what if I don’t eat many carbs that meal? What if I manage to not rise NOR fall after my meal enough to need to go to 140? Because this happens more often than not with my CGM, particularly on days I exercise, which is 5 out of 7. I will start my meal anywhere from 80s to 110s, and finish on the same level 3 or more hours later without going up to 140 more times than not.

Is this every day? Of freaking course not. Some days I do go high. Some I do go low. (I bitch about most of those days on tudiabetes! XD) I’m not bloody perfect at counting both carbs and warding off diabetes fairy events that make my BG crazy for a variety of reasons (equipment malfunction, hormones, WE all know how it is).

But my average day does not swing very much, and this is why I have a good A1c. Not because I’m hanging out low 24/7. I try to tell him instead of having an A1c at 6.5, wouldn’t it be better to have a 5.5 with fewer high/low fluctuations. I get no response to this, as if he didn’t even hear me.

I truly do not think he gets it. I think he has too many type 2 patients who know nothing of their disease, or type 1s who don’t manage theirs as tightly. Which was me, when I started seeing him–and why I liked him to begin with because unlike my last doctor he didn’t take my meter from me and hook it up to a computer. So when I was being ■■■■■■, checking my BG perhaps once a day, sometimes not, I could go into my doctor appointment and not get the slightest bit of lecture.

Funny now that I feel like I’m doing things right, do I get chewed out.

Anyway, immediately after my appointment I thought “well, I should just change doctors”. But then I got to thinking about it, and I realized, what exactly do I expect to get out of a new doctor? Some sort of confirmation that I’m right? A nice pat on the back? Seems rather stupid.

And arrogant on my part. But I’m just not sure how I would benefit. I feel like I have supreme control over my numbers. That my mess-ups cannot really be helped by a doctor who only sees me every few months and does not live in constant monitoring like I do. I control my insulin intake completely. I read a lot about diabetes and am not clueless to the best treatments available.

So what exactly would a new endo do for me? What do you all see your endos for? Because I know there are way more knowledgeable people on here than I… I suppose I just feel that I’m in a place in my life right now where I’m doing everything I can to take care of myself and visiting my endo seems like a stupid game. And when I say that I feel like I’m being ignorant and arrogant, never the less I can’t help it. Perhaps I just need a good kick in the ■■■.

But…at least he gives me two free vials of Apidra when I go in. Hard to be too obnoxious when it ends on that note. :slight_smile:

In all seriousness, I do tend to like this doctor most of the time. He is always promoting the best insulin and devices for my diabetes. I would never have gotten the pump or CGM without him. He seems very well learned. Perhaps that is it? He knows things on a technical level, but I don’t feel like he connects on a patient level. Doesn’t connect the technology to actual use–hence his inability to understand that with these tools he promotes I CAN safely have a 5.5 A1c.

I will concede him a few points: yes I need to be weary of all lows, especially any low patterns. Yes, I’d love to take less insulin to help me lose weight (I did lose 5lbs since October, so it was not as craptacular as I was expecting). But I’m not willing to have crappy BG just to weigh less.

Also, obviously it’s good to have him around for lab tests (though he never explains my results in detail; I look and learn myself), and for thyroid–because I understand this far less than diabetes. Oh, and in follow-up to my last blog, my thyroid is functioning on the higher end. TSH was actually 0.2 (and he didn’t lower my synthroid dose). T3 and T4 were in the middle ranges, though the exact numbers have escaped me now, I remember them not being near one end or the other of the normal range. So, hmm.

2

My diabetologist congratulates me to any A1c below 6. He asks rarely about my awareness for lows. He looks at my numbers and asks questions about trends. He is like a coach to me and it works best if I prepare some questions for our meeting. I am sure he would kick my ■■■ if I would be around 6.5.

I think this is because my diabetologist works in a medical practise specialised on diabetes. He has three colleagues and one of them is only treating foot injuries. Often they are confronted with very severe and sometimes life threatening long time complications. So they are utterly frustrated about passive patients and cheerish those who work with them towards their common goal.

It might be - and this is an ugly thought - that you, having a normal A1c, are a curiosity in his practise. If he shares a thinking that complications are inevitable in the long run then you will remind him to do better. This creates guilt in him. This guilt can be prevented if you fail to proof that you can live a life without complications. I know this is a disgusting thought. But he is taking the results of a study for T2 and projects the death rates measured there on young T1 patients. The study indicated that T2 beginning from a certain age should not endanger themselfes with to ambitious target values. Since T2 is often accompanied with cardiovascular problems the stress of lows should be reduced. To take this study as an argument for young T1 diabetics to increase their target value is a yoke. Although you have all the data at hand with your CGMS he is just theorizing about lows. Your endo has a thinking to seek comprehensive coverage: If he loses a patient in a low incident he might get sued. If this patient is harmed by Diabetes because of his advise he can always claim that it was Diabetes and not his fault. Grrrrr.

3

I want my doctor to be my doctor and not my friend. My doctor wants me to be the patient and not a B#$#sh#$#ter as all of us can be at times in our appointments.

Yes there is the issue of empathy and friendliness I look for in a doctor but more important to me is the competence and how well read the doctor is, have they attended the conferences out there, and do they know the latest studies going on. If the doctor hasnt read some of the mainstay studies or drug problems going on that tells me his/her interest in being a doctor.

If your endo is babbling about some study about going low I would write down the study and do some research on my own. Education is just as important for us as the patient as it is the Doctor. I have learned to go into my appointments that its down to business time and expect the same in return from my doctor.

Good Luck

4

After 34 years of self-care, my Endo basically doesn’t do anything more than provide prescriptions so my insurance will cover the things that I would get myself, if I could. But he does provide accountability, which I sometimes need. So his forcing me to see him regularly, even when I don’t see the need, is probably a good thing.

In defense of your Endo, most people lie to their Doctor (they know this) and most people have poor memories of things like the frequency of lows. That’s been demonstrated in studies. We all want our Doctor to say “good job”, so often people will exaggerate the good and forget the bad. Since you didn’t bring your BG log, your Endo was only doing his job. He knows the danger of spending too much time low (i.e. you can lose your ability to detect lows, which may result in passing out). Next time just take your logs and you’ll both be happy.

Also, keep in mind that the CGM has a lag time and often doesn’t fluctuate as far as your actual BG. While I can keep my CGM between 70 and 140, if I do finger tests at the peaks I often find that I’m really going between 50 and 180.

5

my endo thinks i have lows all the time too! he doesn’t believe me when i say i rarely go low

6

I think you should print out this post and give it to him. It would be a learning experience for you both. If he wants to improve his care of people living with type 1, it would be helpful for him to read what you’ve expressed.

I’m in a similar place with my endo, who after my most recent wearing of a temporary CGM, wanted me to increase my lunchtime insulin to carb ratio but completely failed to address what I thought were too many lows overnight. My first reaction: find a new doc. But after thinking about it for a few days, I’ve resolved to write her a detailed letter of my issues and send it to her before my next appointment. In the measly 15 minutes I get with her, there’s just not time to address all that needs to be addressed about living with a chronic condition. If after that meeting, I get no satisfaction, I’ll make the switch. But don’t I owe it to myself and my relationship with my doctor to help us both improve?

7

Whether you stay with your current Endo or move on, you really should bring in your 3 month chart of BS numbers. Even if it’s just a long list. There is no way they can make solid suggestions based on your A1c. You don’t need to say anything, just start making it a habit. If he doesn’t look at them, you should suggest he take a second to look them over. If he doesn’t…absolute clear sign that you need to find a new Endo and you need to let him know that then and there. You don’t pay for laziness (but you also need to make sure you provide him with the correct info).

8

There are plenty of MDs out there who don’t understand the nature of statistics - even as simple a statistic as an a1c. I have to agree with Renata, if he doesn’t understand your CGM or the CArelink stats, bring him something he WILL understand.

9

Congratulations on your wonderful A1c & great control! Your endo didn’t give you kudos, but we will & we know what it takes.

Sad that your doctor doesn’t understand or believe that your success is possible. He should see you as a shining example of what’s possible, rather than criticize your success as the result of lows. Infuriating.

The ACCORD study he referenced is a terribly flawed study. Equally sad that he, like many healthcare professionals, just read the headlines & don’t bother researching the methodology behind it. You can research problems with ACCORD yourself, but basically the test subjects had exisiting heart diease, were forced (yes, forced) to eat a very high carb diet & given a risky combination of drugs. I stopped seeing a CDE who kept insisting my A1c was dangerously low & I was courting a heart attack because of this study. I tried talking to her, but it was clear she hadn’t really read it.

Most docs don’t take the time to review logs. Agree with the suggestions to take your graphs to your next appt. Let him know ahead of time that you’re bringing them & would like time scheduled to go over them with him.

10

Jaclyn,

First of all, congrats on your excellent glucose numbers! Your use of a pump and CGM and your close attention to your BGs are all testaments to your dogged determination to maintain good control. That should be celebrated, not admonished.

I started on a CGM last September and have downloaded my numbers every few days. I disagree with one comment that says the range of interstial (CGM) readings is wider than the range of capillary glucose. That is simply not true. Interstial glucose values simply lag finger-sticks by 15 or 20 minutes. If capillary BG falls to 70 then interstitial BG will follow 15-20 minutes later even if the capillary BG is headed even higher.

The big eye-opener for me from the CGM data is the standard deviation number. For those unfamiliar with standard deviation, it is a statistic that indicates how much blood glucose varies above and below a mean or average.

One standard deviation includes about 34% of all the data. So if your average BG is 100 and your standard deviation is 25 then for 68% (34% above and 34% below - plus or minus one standard deviation) of the time your BG ranges from 75 to 125.

The most important thing that I have learned is that the lower the standard deviation, the closer I can safely bring down the average towards the “danger zone.” The danger zone being less than 70.

Wearing a functioning CGM and paying attention means one can “drive” much closer to the “cliff” and still maintain reasonable safety.

I wonder if your endo (or many others for that matter) fully grasps that reality. You are not a typical patient. As I’ve said in other threads, I consider an endo as a valuable member of my team but I remain the senior partner. The endo’s advice must be listened to and respected but you are the one with “skin in the game,” not him/her!

I say, keep on doing what you’re doing. As a 26-year T1, I aspire to reach the numbers that you’re already experiencing. Good job!

Terry

11

Wow, I would say goodbye to this doctor for sure! Mine never lectures or judges me, yet can tell me things straight up without the need to judge. He downloads all three of my devices (Animas Ping, Ping glucose monitor, and my Dexcom) and interprets the results for me. I can also reach him by email and he always responds to me in less than 24 hours! Do you belong to a group on here for your region? I would be asking for endo recommendations.

12

Jaclyn wrote:
“I disagree with one comment that says the range of interstial (CGM) readings is wider than the range of capillary glucose. That is simply not true.”

Jaclyn, that’s actually the opposite of what I wrote. It’s important to keep in mind that user results can vary significantly with CGM’s, and even a single user can have varying levels of accuracy with different sensors or even with the same sensor. My statement was based on 3 years of personal experience. As much as I love my CGM, I know for a fact that in my case the CGM generally doesn’t go as high or low as my finger tests. My Endo knows that too and always asks for meter test results too.

This study showed that CGM’s have an average of 15 - 20% errors at hypoglycemia situations:
http://care.diabetesjournals.org/content/31/6/1160.full#T1

So it’s important not to put too much confidence in your CGM. It’s great trending data, but people should realize it’s accuracy limitation.

13

I have had doctors - both endo and general practitioners - who are unwilling to work with me as a team. Some of these doctors clearly want the upper hand in the doctor patient relationship. They take less time at listening to me, even if I am providing him or her with excuses, and try to “educate” me with fear mongering (i.e. heart attacks, kidney failure, etc & ad nauseum). For me this doesn’t work, and I don’t go back as I don’t need that kind of attitude in my life. It is also counterproductive and not very helpful in helping to make any proactive adjustments to my treatment.

I have a pretty good endo now, but I think I frustrate her a little because I wasn’t good at documenting my BG/carb etc. before my appointments. I got a new pump recently, and for the first time, was able to bring in a ton of data with me, and talk about a happy camper! She was not only excited about the best A1C since starting to see her a few years ago (at 8.0, which by some other doctors might have been more critical - but she recognized that for me it was something to celebrate), and even more importantly, she was able to make some concrete suggestions about how to adjust things.

I suggest that if a doctor isn’t working for you, or more importantly with you (it goes two ways of course, it it sounds like you have made the effort on your part), then you need to investigate your options, which may mean adjusting your expectations of him (accept his criticisms as just that, and let it roll off if you can, taking whatever nuggets of insight he might have) or look at another endo. For me the latter would work best, but at this point, you are not likely going to singlehandedly change him.

Another concern for me is that he doesn’t seem to be prepared to listen to you. Whether he has 90% of his patients lying to him, or not, part of a doctor’s job is to listen, and to respond in a way that is rational, perhaps giving a viewpoint, and able to substantiate it. This unwillingness to listen might be something you can ignore or deal with on your own now, but if the relationship is one where he doesn’t hear you or listen to what might be underlying your health concern, what about when you really need him to listen. A good doctor patient relationship goes beyond the technical expertise that he has.

14

I have read that there is a higher rate of stroke and death with lows and he’s probably focusing on that instead of the information you are giving him. My endo sits and reads my log book every time. If I’m low she adjusts my basal right away. If I’m high she just wants to know what happened that day. Very low stress, and she looks to see am I healthy, what’s going on with my body systems, etc. Sorry you have somebody that won’t listen to you. (like my primary doctor,)

15

Ken,

I think that you intended to respond to me instead of Jaclyn. I followed the link within your comment. I read it closely but could not comprehend fully all the statistical terms. I’d be interested in a fuller discussion of this topic but we shouldn’t hijack Jaclyn’s discussion.

By the way, as a DexCom 7+ user, it was somewhat alarming to read about the poor performance of DexCom in the study. My concerns, however, were resolved when I read that the DexCom sensor used was its three-day “STS” model. The 7+ sensor, as noted in the study report, performed better.

Jaclyn, great discussion. Please excuse the digression.

Terry

16

Ken/Terry on CGM accuracy: After wearing my Minimed CGM for over a year every single day I possibly can (i.e., barring it not working for one reason or another), I will say that for me it sometimes hits the full highs and lows and sometimes not. Mine is quite temperamental based on the spot the sensor is in. I have “good” spots and “bad” spots, and everything in between. Within a day, I can figure out the extremes of my CGM numbers and match them to my meter numbers. So there are times when my CGM will read 70 and I’ll be 50. Or it’ll say 190 and I’ll be 250. Others when it will be right there with it. I’m obsessed with it’s tricks; besides, I truly do realize its value is in the trend not the actual number it gives. And funny enough, this is another reason I like to hang out in the 80 - 110 range. CGM is near always accurate there; and I feel like I’m more steady and won’t tip either direction as easily. Where as if I’m hanging out at 130-140 like my doctor seems to want at least some of the time, I feel like I’m teetering a fine line and could tip high too easily and not catch it or get obsessed and over-correct a tiny high. Anywho, I don’t mind the topic digression. :smiley:

Thanks to everyone for all the comments. It’s extremely helpful to read what others think on the matter, and thanks for those who had info on this study. I recall it being discussed on tudiabetes from time to time, and couldn’t remember the name.

I will try and stay on the ball and bring my logs next time. I’ve been thinking about it and realize I’ve had a bit of a hang-up about showing doctors logs. My first doctor would criticize every high I had, and I couldn’t deal with the imperfection. Back then I learned a trick to erase all highs from my meter, so they wouldn’t show when he imported them to his computer. Stupid, stupid! Anyway, I’m not a teenager anymore, so I don’t have that urge to be that goofy. However, I still have this fear my new doctor will not be understanding of me having days where I’m more lax about diabetes. Days where I want to eat what I want and hit 250 (not hang out there all day, just hit it after a nice meal of tex-mex food or something!) and not completely freak out about it. It’s not often, but it’s there, and I don’t think I can handle having to rationalize those kinds of high numbers to him. Anyone sympathize with that? But yeah, that’s a lack of trust issue on my part that I should just get over.

I seem to oscillate back and forth between wanting my doctor to be completely aware of my diabetes management, and keeping it private out of lack of wanting to be criticized.

Oh, I just have perfectionist issues. Making me both good at diabetes (snort) and a complete nutcase.

17

Jackly,
change this endo.
I am changing mine too. I started with the OmniPod and it is great. I love it. But my endo does not download any data. she wants me to write everything down. she does not want to see any of the data, nor graphs.

If you are feeling well, forget about what your current endo says. It is hard enough to have a disease that must be controlled 24/7 with numerous factors affecting it, to then get lectured… It is so upsetting to me…

18

I get the same study quoted to me at every visit too. I also get told to relax at little on the insulin and let my A1c creep up a bit. No thanks, its slolwy creeping up on its own, I’m fighting to keep it in line. I don’t want to lose my feet or vision, or my kidneys down the road. I have enough health problems already!

I am supposedly in the high risk group too, according to the study, so he’s really at me to let things slide a bit.

He’s also been pushing statins at me until recently. I’m not taking the risk, because almost every prescription drug I’ve ever been prescribed has caused serious side effects. I’m just way too sensitive to them. My doctor didn’t want me to even give them a try and I have found safer alternatives.

I do get some positive feedback though, which encourages me to stay on track. He tells me at every visit that I have better numbers than any other patient, and I get the same thing from my doc and diabetes nurse too. They call me their poster child for good BG control. At least I’m doing something right!

We have to keep in mind that we are approaching this from a different perspective than those trained in the medical profession and that we have to deal with it on a day to day basis, something that most endos and doctors never have to experience. They go by what they are taught, statistics, and studies, plus what the drug companies are telling them.

We have to go by the results we see and feel every day.

I print out my meter readings and take them in for my endo, doctor, and nurse to see. The more info they have, the better they can advise me.

Its your body, do what you know works for you, but do listen and weigh the pros and cons before making a decision. After all, that’s what you pay the guy for, right? Advice.

19

I was having problems w/ my endo in regards to my A1c. I was trying to actively work for an A1c in the 5.5 to 6.1 range. I never made it there. I got stuck at 6.3. He gave me the same speech about frequent lows. After this, and a series of other issues (not listening to me, asking me the same thing over and over again) I got frustrated. He was my endo for around 6 years. I finally “broke-up” with him and was lucky enough to find an endo in the diabetes center at Vanderbilt University Hospital. It’s nearly a 2 hour drive for me, but after being there for nearly 6 months (I’ve had several appointment), I am very pleased. I work with a team (my endo, nurse practioner, and dietician) and they always listen, discuss options, etc. You need to find someone who will work WITH you and not preach AT you.