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.
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
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.