Disturbing encounter with son's endo

Sorry to lay out my sorrows like this, but even the posts I have read on Tudiabetes regarding strained doctor,patient encounters did not prepare me for the unpleasantness that my son and I just went through today. My son has been working hard managing his diabetes. He was diagnosed as type 1 on Aug 2 with an a1c of 9.8. His new a1c is 5.3. He still has some issues with variability. He's had a few non threatening episodes of hypoglycemia in trying to bring down a high blood sugar. I expected the endo to give us some guidance in fine tuning the insulin dosage to bring down a high. My son's goal is to keep his sugar levels as consistent as possible to avoid having to compensate for a high in the first place. Well, the endo (at Joslin I might add) literally screamed at us that diabetics can't have normal blood sugars otherwise they will develop complications or even die from hypoglycemia.We are well aware that a severe hypo can be dangerous.She was using some of the low readings on my son's meter as evidence against us. People should keep a special doctor meter handy that shows only acceptable doctor numbers. She alluded to the fact that my son's a1c was normal and that we should seek out another doctor because attempting to maintain a normal blood sugar is against the Joslin philosophy of 7%. Honestly, I don't know what she would have done if he had come up with an acceptable Bernstein number of 4.3%. She was insulting, even suggesting that I had a mental problem by being so obsessed with numbers. Did I want to find my son dead in the morning? etc. etc. She even brought up our old friend the ACCORD study stating that they suspended the study because people were dying of hypoglycemia. Can you believe that? We are shaken but not defeated. We did manage to bring the discussion back to a civil level by agreeing that we need to find a compatible doctor. My son and I are new to diabetes. He deserved an attaboy from this doctor and encouragement to improve his diabetes management, not to leave the building sad and discouraged.

Sorry to hear you had some troubles with your endo. I would suggest firing them and finding one you can agree with. I believe endos are very scared about the short term issues regarding hypos and the possibility for legal recourse. I also believe that if a T1 wants to achieve (near) normal euglycemia, then minor lows are unavoidable. Its a matter of personal opinion on what is too low, mine is that normal people can reach the mid 60s so that is as low as I want to go. I am also quite concerned about developing hypo unawareness. This endo sounds dated on her approach to treatments, as I believe many T1s can achieve an A1c at or just below 6% with the right education and determiniation. What does your son consider too low?

When your endo brought up the ACCORD study I might have asked for my co-pay back! I am assuming she would not listen to the reason this study cannot be extrapolated to health T1s and the flaws in the study (study used T2s with a comorbidity and 1 arm of the study used Avandia (I think)-now no longer on the market due to side effects).

If your son is achieving his 5.3 A1C without too many lows then I will certainly say it. Kudos and Attaboy!

Please pass MY attaboy on to your son!! I totally agree with Capin- I have occasional (what I call) minor lows as well. Dexcom has helped a lot with that! Please do find a more compatable endo. I'm very lucky to have mine - he looks at my results and may caution me gently, but even more, he gives me kudos!

I feel your pain. I have seen 9 different endos in my area over the last several years. They are useless. I just use them for blood work only and manage my own health. The current doctor is nice but clueless and insists I eat more carbs. I refuse bc I know my good A1c is due to healthy eating. Mainly low carb. Find another doctor. I would report the other one too. I have written reviews online too - the last doctor I saw was so rude and unprofessional I wrote a letter to the owner of the practice and blasted the jerk on some online sites. Keep up the good work and find a better endo.

I would sugest firing this doctor and turn them in bet they have a boss somewhere or even reporting this to Joslin. I don't know how old your son is but he is doing a great job with his A1C wish I could get mine down like that if you or him was doing something that was wrong it is the doctor's job to get you back on trac not jump on you or him for that matter I would not put up with a doctor talking to like that let alone my child it is time to fine someone that can give you the respect that you should be getting

That's a fantastic result! Congratulations. I'm stating the obvious, but your endo is an idiot. I would agree with Capin101, if you can avoid going below mid 60's and achieve an A1c result in the high 4's or low 5's, that's perfect. Trying to get to the low 4's will probably result skirting a little too close to the wind, and the incremental benefit is probably not significant enough against the risk.

I think she was having premenstrual tension. Yes a doctor who does not have D does not comprehend that the meter will show what we, as Ds, are trying to find out, results during busy lives. There will be numbers all over the place.
Do find another doctor and team that is willing for 6%. I remember calling the diabetic teaching groups at hospitals and asking which of the doctors would put up with me at 5.5 to 6% A1c. I asked, "Who would you go to if you were me?"
And write a letter to the chairman of the department to notify him that you have moved on because 7% a1c = an average blood glucose of 154mg/dL and that diabetic people now have testers and have read the literature suggesting 140 mg/dL and below is supportive of a life without complications.
Now as to lows at 5.3, the more lows the more likelihood of unawareness. And the more likelihood of unawareness, the more likelihood of a fast, sudden low, one that one can't catch as it's going down. Do be careful to put that target at about 115 for awhile to decrease lows. And figure out how far down one unit is taking him - the sensitivity - maybe different at different times of the day.
Just shake off the last visit and set yourselves up with someone you can look forward to.

I'm so sorry you had that experience!

Let me add my voice to the chorus!

Your endo is (1) ignorant, uninformed, and out of date, (2) offensively rude, and (3) wrong. You and your son deserve huge congratulations for that A1c, and if you want to improve it still further (which, IMHOP, is a good idea), then more power to you.

And yes, you absolutely need to find another doctor. Your son needs a doctor who is his partner, not his antagonist. And they are out there! I speak from experience. Shop until you find one. It's the least your son deserves, especially after the hard work he has done to get this far.

And thanks for teaching me something I didn't know -- that Joslin thinks 7% is okay. Ridiculous and absurd.

Congratulations again. Keep on doing what you're doing, and don't let the negative idiots of the world tell you any different, whether or not they wear white coats.

Thanks for the feedback. A part of me would love to see this doctor reprimanded, but she probably reflects the mindset at Joslin. In the beginning, the relationship was very friendly, but as I have found out, once you become independent and start to ask questions you are treated differently. I am positive that if my son's a1c was more in line with the expected result of 7% she would not have looked twice at some of his low blood sugars and this is definitely an area of concern for us.He feels fine at 65, but any lower he feels shaky. He tries to correct at least to 80 as a target range. I don't think he has been in a dangerous low as he seems to have a good hypo awareness and has caught it quickly. There have been 3 incidences since August and hopefully it will become a rare occurrence. I think a Dexcom could be a very useful tool for spotting trends.

Congratulations on the great results! I agree with Capin101 that fear of law suits is the root cause of these recommendations.

Unfortunately the ACCORD study will be quoted and misinterpreted for many many years to come. When a Dr. quotes a deeply flawed study, done on T2's, to give advice to a T1 they have lost all credibility in my view. If Joslin's philosophy is that the goal should be 7% perhaps it's time to ditch Joslin altogether.

Second the motion.

I wonder if your son is still in his honeymoon period. If so, then an A1c of 5.3 is not only great, it’s a GOOD thing, and if I were his doctor (I’m not a doctor!) I would be jumping for joy, because it means that you and he have been taking this thing seriously, and using the time to learn about diabetes. When a child is so newly diagnosed, and DOESN’T have such a good A1c, then it means that the family has NOT done their homework, and is not using the time to prepare for harder times ahead.

As others have said, the ACCORD study was conducted on T2’s and all of them had comorbid conditions, and in NO way can it be applied to T1’s or even healthy T2’s. And especially not young people.

The risk of hypoglycemia is real, and needs to be taken seriously, but you shouldn’t be quivering in fear of it. A good protein snack before bed can help, and many parents check their children at 3 AM or thereabouts – if the child is low, you can give him a snack. Yeah, it’s a pain in the butt to have to set your alarm for 3 AM, but it just gives a little edge of safety, because although your son has good hypo awareness, he could be sound asleep during a hypo and not be able to awaken enough to call for help.

So, yeah, I join in the applause to you for being so conscientious, because it will serve you in good stead. Eventually, all you (plural) will need is a doc to prescribe the insulin, and you’ll be pretty much on your own, and I’m fully confident you will handle it in great style! :slight_smile:

Wow, congrats to you and your son. Amazing that we have been conditioned to believe that the Dr knows best only to find that that ain't necessarily so.

Good luck to your son and his new Dr.

I have always tried to keep my BS in the 85-95 range as a target. I have been a T1 for about 55 years and got the first blood strips myself when they came out in the early 80's. I admire your son very much for trying to keep normal. Please pass on our kudos. I do think 80 may be a bit too low to target. The trick is to keep your standard deviation low (the range of swings). I also know, and there is literature to support this out there, that A1C's above 6.5 for long periods increase your risk of complications.

When your BS drops below 55 it can place stress on the heart (and of course the brain). Whenever he has low BS (<55) always have him take Glucose/Dextrose to bring it back up quickly. Don't mess with candy bars and other slower acting sugars. Take Glucose. Then, supplement with carbs. Long periods of lows are bad. You should be aware of how many carbs will increase your BS levels. This data is buried in Burnstein's book. But, simply said, for a 175 pound person taking 1 four gram glucose tablet will increase your BS by 16 Mg/DL. This assumes you have no other active insulin on board to further lower it. So, for your son, he likely weighs less than 175. I calculated and inserted the data for other weights below. As you can see, the lower body weight the more the BS will raise taking 4 grams of carbs. So, my point here is...don't take too much or your BS will go too high :) Just use this a as "guideline" only please.

Glad, you changed doctors. By the way, I went to Joslin last April for my 50+ year study. There is a 50 year alumni reunion this spring I will be attending in Boston. Ken

The first column is body weight, the second column is how much BS will raise in mg/dl
with 4 grams of carbs

35= 80
70= 40
105= 28
140= 20
175= 16
210= 13
280= 10

Hi Ken,
Even though our last doctor experience at Joslin was unpleasant, we have met so many fantastic people, just chatting in the waiting area. Everyone has been so willing to share what has been helpful to them. People like myself and my son are hungry to know what works. The thought crossed my mind that Joslin, in addition to honoring people like yourself for being the pioneers for living well with diabetes, should use you as examples, and say to their patients this is what can be accomplished with dedication and hard work. The message that we have gotten though, is they (medalists) are somehow different but you are not.
I appreciate you sending along the info on dealing with lows. I've reread Bernstein's chapter on that. I am taking your advice to heart "to keep the standard deviation low". -hope to hear about your spring reunion.

To repeat others, I feel your pain. My experience has been similar. I head to my appointments craving a gold star and leave dejected. I understand what you've gone through to achieve these results and why. Congratulations! Please pass along an attaboy to your son.

Actually, I would find another doctor. This doctor is not following Joslin's guidelines, which are quite consistent with the AACE. Here is the quote from the Joslin Guidelines:

A1C target goal should be individualized for each patient.
A goal of < 7% is chosen as a practical level for most patients to avoid the risk of complications. Achieving normal blood glucose is recommended if it can be done practically and safely.

Note the section in bold. I think you have every reason to ask for another Joslin doctor who will actually "FOLLOW THE GUIDELINES."

Good job of research, Brian. And I note that these guidelines were issued in May of this year, so they are current. But, one caveat:

The document you quote says specifically that these guidelines are indented for adults. Since they chose to make that point explicitly, it is possible that they have different standards for children. So this doctor may THINK she is following the right ones.

Let me be clear: I am not endorsing or condoning this doctor's behavior. Far from it (see my rant, earlier). But there may be a wee bit more here than first meets the eye.

Yes, I think it's time for my son to move on to another doctor. My son is an adult but he has some learning disabilities which make it necessary for me to be a strong advocate for his health care and some other areas where the decision making may be more complex than he can handle. So physically he is an adult and his diabetes management would follow that of an adult. So this doctor in stating that "diabetics can't have normal blood sugars" contradicts the Joslin guidelines is all the more infuriating. She actually misrepresented Joslin. The current Joslin guidelines seem quite reasonable especially since it states that "A1C target goal should be individualized for each patient." Seeing as we were pleased with some other aspects of Joslin Clinic, we may well switch to another doctor there. Thanks for digging up the info, Brian

Ah, didn't get that about your son's age for some reason. Yes, you're quite right. Not only is she ignoring the Joslin guidelines, then, but she is totally on the wrong side of Bernstein in saying "no normal blood sugars." And in my experience so far, Bernstein hasn't been wrong yet. Not once.