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 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.
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.