Setting Goals

I have been going back and forth with the CDE at the Joslin clinic where I have been going for more than 10 years. I was angry that I had been stuck on a sliding scale for insulin and had been struggling with some devastating lows and bounce back highs. I sent some bitchy emails to her and pretty much got the same back. So I decided since you get more flies with honey, to try a new approach. Here is what I wrote:
When I read back over my emails to you yesterday I realize how incredibly bitchy I sound and I am sorry for that. My attitude is born more of frustration with myself but I don’t want to alienate someone who I know has my health and well being at heart.
So I read an interesting article last night about patient empowerment in diabetes self management and realized one of my problems with taking care of myself is I have no specific goals with regard to my diabetes and general health. So I have decided to set some goals and a time frame to achieve them. By December 6th which is my first appointment with Dr. X I intend to:
1. Maintain my A1C as close to 6.0 as I can without hypos, if I can’t do it without too many hypos then I will aim for 6.5 instead. I can check this by downloading my glucometer readings and watching not only the lows but also the coefficient of variance and try and keep that below 30%. But at the same time I will try not to look at a number as “bad” or “good” just as a number to guide the next shot or the next meal.
2. I will work as hard as I can on getting to be an expert on carb counting so that I can better match insulin doses with what I eat.
3. I will get my weight down to 150 pounds and maintain it there but I’ll qualify this with it will be on my scale in my bathroom. If I happen to go lower then fine, but I think a bmi of 23-24 is a good target for me.
4. I will attempt to get my blood pressure down by not sweating the small stuff, by eating right, and exercising.
5. I will stop being so hard on myself for past mistakes as I can’t change the past I can only work on myself now and into the future.

So I think these are realistic, achievable goals and I would appreciate it if you have any other goals to add, or you have a problem with any of my plans please let me know.
Thanks in advance,

Her reply:

Goals are great. Yesterday was an aaha moment for me on many levels especially when I pulled your record to see we had never met for education prior to the sensor. I believe when you emailed me I asked you your ratios and you weren't using any. I'm happy this is a new beginning for us all. I think you should see me though at least twice a yr. I'm happy to email in between visits but we do need to have a few formal visits for both of us as email tones can often be misunderstood. If you call for an appt. ask for an hour visit as I don't think a 30 minute follow up would be enough. Thanks and aim for 6.5. Lower is not always better based on research studies."

I will probably bring the article I read about brain shrinkage occurring with "high normal blood sugars". And I am not sure what research studies she is referring to, but I am really happy to start over as well.

Love it Clare. I find that if I don't have goals, I stagnate. An hour appt with an endo is quite an accomplishment! Hope you can educate each other.

Goal are great because if you aim for nothing you will hit it every time. Your Email was great. Something tells me that you could tell someone to got to hell and have them looking foward to the trip. It's not what you say it's how you say it. Good luck with your appointment(s). It looks like your on the right track

Gary S

Geesh, expected more from Joslin than sliding scale. Frustrating!

Great email to her. Put yourself in charge & you'll be healthier.

Your doctor is probably referring to the ACCORD study, which was a badly designed study & flawed. Most just read the headlines that basically stated lower A1c's cause heart attacks, but never read the actual study. The study subjects already had advanced heart disease, were put on a high carb diet & given a very risky med cocktail. Patients died during the study period. Unfortunately for us, doctors & CDE's keep quoting the erroneous ACCORD research as gospel. In what universe does a higher A1c equal health?

Thanks for the comments all and Gerri I will thoroughly read the ACCORD study before I go in an meet her next month. I will also be bringing these 2 articles with me, and
they both scared the crap out of me.

Ok, I read the ACCORD stuff and I think you are right Gerri, that is what my CDE is basing her recommendations on. But as you said it was poorly designed and took a bunch of mostly unhealthy subjects and was on Type 2's. The one part of the paper I took away was:
"However, compared to participants in the standard group, those in the intensive group who began the study with no history of heart attack or stroke, or with lower blood sugar levels (A1C level 8 percent or less) had fewer combined cardiovascular events – fatal and nonfatal heart attacks or strokes – during the study."
Which they didn't emphasize at all. But it is the thing that pertains to me so I will probably bring a copy of that paper with me as well and just highlight the parts that pertain to me.

We have discussed the ACCORD study before. It still just amazes me how misinformation can take on a life of it's own. Back in 2010, I found a quote from the lead ACCORD researcher who in June 2009 declared at the 69th ADA Scientific Session that "ACCORD: Intensive glucose control not to blame for excess mortality" (see the article in Endochrine Today).

A previous endo (he who shall not be named) took great offense when I brought this up to him, essentially countering his advice.

Thanks Brian, since I have already taught this CDE about C-Peptide and it's potential to reverse neurovascular and neuropathic complications in D, and I have taught her about the GlycoMark test which she had not heard of, and had not seen ordered, I will now attempt to teach her how to critically read a journal article. I'm thinking the Joslin should be paying me, or taking it out in trade, I'll teach her about D stuff and she can loan me the new Dexcom and teach me how to use it. Fair trade I would say.

Sliding scale, basing recommendations for a T1 on a flawed T2 study. My first reaction was that you need to find a new medical team, even if Joslin has a fine reputation. But your CDE seems willing to listen. In addition to the fair trade you mention, you might actually improve the care of other patients through your discussions with your CDE. Fair trade indeed!

I am going to practice on my primary care doctor first. I am seeing her next week for a flu shot but since hers is a concierge practice and I pay a lot for her undivided attention I will bring this up. Last time I saw her my A1C was 6.4% and I told her I wanted to get it in the 5's but she too said lower is not always better. So apparently they all read the flawed study. I sent this email to the CDE today:

OK, I will make an appointment for late October or November if you have the DexCom then I would like to check it out. I am not sure what research studies you are referring to regarding a lower A1C not always being better, but my guess is it is the Accord studies which from my understanding were not very well designed. And the 22% higher death rate in the intensive treatment group was not even remotely linked to intensive glucose control. And hypoglycemic events were also not to blame. What may have been to blame is they took a bunch of unhealthy patients who had previously suffered some cardiac event, had moderate to poor Type 2 diabetic control and fed them some combinations of oral agents and mixtard insulin and then were shocked that some patients died from cardiac events.
Here is the post from the original Accord study author

Since I am not a poorly controlled Type 2 diabetic I will attempt to keep my A1C in a range that will avoid hypos if that is 6.0 fine, if it is 6.5 fine, and if it is 5.8 then fine.

She may grow weary of hearing from me, so I will back off a bit for now, but I do hope she reads the article and I certainly hope that I can improve the care of other patients at the clinic as well.

Another good email. Pitiful when we're educating the diabetic educators, but whatever it takes.

The other issue that comes into play is health professionals not believing more normal A1c's are possible without frequent debilitating lows. They don't know how to guide patients to stable BG & assume it can't be done. A huge disservice that impacts health. There's widespread medical phobia about hypoglycemia. I'm not dismissing this as cause for concern, but it's taken on mega importance because they could be held liable. Tragic & malpractice that the long term effects of high BG isn't given as much consideration.

A CDE reprimanded me for a low A1c. I asked what she thought of the ACCORD methodology. She didn't reply, so I safely assumed she, like many others, hadn't actually read it. I never went back to her. Same scenario with my PCP.

So again I decided that the flies and honey approach would work better, so this was my next email.

I'm sorry that was again bitchy and I promised myself that I would stop that. What I meant to say is: can you please provide me with a scientific reference or research study involving a Type 1 Diabetic population that shows an A1C of greater than 6 is better than an A1C of less than that with regards to long term health and avoidance of diabetic complications, or overall morbidity and mortality.
Thanks in advance and again happy Saturday, Clare

The response:
Wasn't referring to the type 2 studies , ACCORD, ADVANCE etc.
As you know DCCT and EDIC support lowering BS/A1C to reduce micro vascular complications and promote less CVD but not without a significant risk in hypoglycemia especially in people with type 1. The ADA and AACE support a 6.5-7% as long as hypoglycemia is not an issue or if a person has unawareness.
Of course it's your preference and goal but lower because of complications of neuroglycopenia is not always better ( or safer). Suns out!!!

Now I'm going to have to look up neuroglycopenia...but before that I will take my dog for a walk in the sun.