The Older I get

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1

The less I feel like doctors want to listen to me.

I have hit a wall in my search for a doctor who will acknowledge that I know just as much if not MORE than he does. This latest doctor is the worst! Not only is he the worst, he loves himself WAY TOO MUCH. He says that he is working with Minimed, consulting with them to change things, but the changes he suggests do NOT coincide with how I manage my diabetes. As a matter of fact, it leaves everything to the doctor [which is good for the doctor with the God complex]. It eliminates the use of 95% of the data I get from my CGM and pump. He wants premeal blood glucose levels and a bedtime one, if I feel like it.

WHAT THE YOU-KNOW-WHAT?!

Isn't that taking a step BACK in diabetes management?

"Uh, yes ma'am, it sure as hell is." <--that's me, talking to myself.

See, there's this AVERAGE in diabetes that is a statement of about how much basal insulin [basal is the ongoing rate, not based on what you eat] a typical diabetic will use. The rates, starting at midnight, rise at predawn then slowly decrease through the day. Sooo, maybe I'm not that typical, but Dr. God, on seeing my rates, shook his head and said, "This is a mess."

He then proceeded to suggest changes that replicate what an average diabetic's basal rates should be.

But, after seven years on the pump and three kids later, I can tell you, without a doubt, that my basal rates do not follow that trend. WHAT?! how is that possible?! But, again, as with my last doctor, I wanted to give him the benefit of the doubt. [or perhaps I just wanted to prove him wrong] But I changed my rates to his suggestions and watched my sugars go way up and stay there for three days, with just an occasional drop because of the raging corrections I made.

Now, let me set you straight. Perhaps you want to believe I'm just too obstinate or rebellious or bad. What do they call it when a patient refuses to follow doctor's orders? I don't know, but it would be easy to believe I am that patient. It's true I've changed doctors a good bit, but at this point, it has never been because I disagreed with a doctor. I just move around a lot. When I saw this new guy for the first time and he said my A1c of 6.4 was good, I knew it wasn't going to work. I've had an A1c of under 6 for over a year. I've had NO hypoglycemic episodes [low blood sugar symptoms] of the debilitating variety. My sugars are tight and that's how I like them, because we all know that the better and lower I can keep them, the less likely I am to get complications. You know, like retinopathy or neuropathy or glaucoma or appendage loss... heeellllllooooo?!?! Dude, really? Don't tell me a 6.4 is okay. Ask me if a 6.4 is okay with me.

This is the first time in 23 years, I am about to cancel an appointment with a doctor because I really dislike him alot. Part of me wants to write him a letter to make sure he knows that he is NOT helping the diabetic community. That his methods, even if they work for him or most of his patients, are not giving them the tools to manage their own diabetes, which is the ultimate freedom.

Or I could just quietly leave.


I just switched from Standard Tricare to Prime, which basically means we're going from a PPO plan to an HMO plan [another story all together], but it does give me the option of talking to another doctor and getting a feel for who out there, if anyone, can let me be in control. hahahaha


I blog regularly at http://www.bethannestrasser.blogspot.com. Feel free to come by and follow me there. Have a great week.

With Love,

Bethanne

2

I've been at this 30 years myself.

The "dangers of hypos" lecture is standard stuff no matter what.

A good doc might compare your rates with others out loud as a friendly reminder. If he starts doing it but it doesn't seem all that friendly... I agree I would be pissed off too.

An A1C of 6.4 really is pretty good. Way better than average for a T1 on a pump or MDI. I'm not saying that better isn't possible, but no T1 gets an A1C in that range without a lot of effort and I think its appropriate for a doc to acknowledge the effort.

If compliments from the doc are rubbing you the wrong way then maybe the doc really is too abrasive.

Tim.

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Hi Bethanne, I can relate to your anger and frustration. I brought my cgm reports to my most recent endo appointment and he didn't even look at them! I handed the reports to him twice and twice he sat them down without looking at them.

When I told him that the cgm has made a huge difference in my ability to flatten my lines and totally eliminate lows and wish I'd had the Dexcom as a tool years ago (I'm almost 25 years in with D), his response was to roll his eyes and say "No you don't. The technology just isn't there yet."

Okay doc so you're telling this to someone who lives it 24/7 and sees the difference it's making when you're not diabetic. Wonder if he could see the steam coming from my ears?

Oh and by the way, my basal pattern follows the same as yours so I guess I'm not typical either. I've also found that my current lunchtime I:C ratio works at noon but is too much insulin if I eat late like 2 or 3 p.m. The same ratio at 2 or 3 will give me a low 45 mins to an hour later. When I asked my endo if this was typical, his response was no. I guess I'm just imagining it then.

I feel like my life is one big science experiment. Good thing I was always pretty good at science!

4

Bethanne, I feel that you and I are on the same page. The doctor that was the head of the family practice when I was dx in in 1988 hated it cause I read everything about diabetes. I definitly knew more than he did and he knew it. Didn't stop him though I'll give him that. I tried gluclaphoge (spelling) and it made me sick. It was in my chart. What did he always want to prescribe when I had to see him? You guessed it.

I too have moved a lot. I had an endo here in Mississippi that was golden but he gave up private practice and is doing research only. Since then I have seen 3 different endo's and they have all been clowns in my book. I will find another good one.

If you and the doctor cannot talk and have a two sided dialogue, then it would never work.

Good luck.

Sparky

5

I feel your frustration and upset, Bethanne. I'm very new at all of this and consider myself to be blessed to have a fabulous endo who listens to me, goes over my log with me with all the care and detail I want, answers my questions and gives me loads of encouragement. He says that he expects me to know my own body better than he ever will and that, from his perspective, we're working on an interesting set of problems and puzzles together, recognizing both that there are general guidelines and that every person with diabetes is different from every other one. I'd done a lot of reading and studying before I met him and had been a little anxious that I might seem to know too much or not be willing to listen to him--you know, the way that some people attribute negative stuff to smart women who are trying hard to do their best.

I'm sure you know what's best for you. It sounds like you have a great understanding of what's going on with you and of what you need to achieve to feel that you're at your best and that you have the tight control and probable outcome you want.

I think you should absolutely find another doctor because, even if you can get this one to hear your concerns and critiques, I'm not sure you'll feel confident or able to trust him very well. He might have some good suggestions to make, but it might not be easy for you to be open to them when you've had such strong disagreements now.

Maybe you can interview some pharmacists and/or people in your area who have diabetes and are happy with their endos to find out who might be the best match for you. Maybe, if you can explain to potential new doctors how you see your diabetes, the kind of control you have had in the past and expect to re-gain, and how much you're willing to do to achieve it, you'll be able to rule out anyone who isn't able or willing to work in concert with you.

I think that too many doctors have made some very negative assumptions about diabetes and people who live with it. So much has changed in the last 10-20 years. We know so much more than anyone did then. And, while I'm sure that nobody wants to have complications of any kind, until fairly recently, it seems to have been more a matter of luck than anything else that helped people live without major difficulties. Since a lot of thinking about diabetes of all types has basically blamed the patient for being non-compliant, cheating or deliberately making poor lifestyle choices, I think it's going to take another generation to get past those attitudes.

You sound like a strong woman. I admire your determination and I applaud the success you've been having. I hope I will be able to do as well as you have in the coming years.

6

Oiy! you all have left me with such a good feeling. I hated feeling like such a bad person, like I had to follow along when I knew better. I want a good doctor who will work with me and I know they are out there. Maybe not in this area, but somewhere. :) At this point, i just need a doctor who will talk long enough with me to find out i need Rx refills. Doh! 2 appointments with that guy and I'm so upset and irritated that I forget I need to get new Rx for my insulin and supplies. Grrr.

It does seem that the bottom line is a diabetic knows more about themselves. If they are tracking and aware, no one can no more then they do. There's so much more to fixing sugar levels than just insulin. I haven't had a doctor want to or instigate a discussion about my eating habits since I was diagnosed. I want a doctor who will help me figure out insulin sensitivity and carb ratios. I still mostly wing that one based on averages. But there has to be a way to actually calculate it...don't you think? I know Bernstein thought so.

I agree, 6.4 is very good. I wouldn't thumbs down that number unless I'd been holding at 5.7 for so long. Which I have. Anyway... love the discussion. I did get a recommendation for another doctor in this area. Though he is old school as well, I hear he is more likely to listen and work with his patients. Maybe I'll give him a try.

7

OH! and that's how it was for me, smileandnod. I brought three days of my sensor graphs because I misunderstood and thought that's what he wanted. No, he wanted three days of data for mealtimes. when I handed him the cgm data he shook his head and went on about how this is way too much information... he couldn't do anything with it. o_O That's when he went on about working with Minimed to fix it... *eyeroll* I need to find the MMrep around here and ask what she thinks. And if that's even true. How can that be true?!

8

I feel very lucky to have a very good endo. I have had the feeling, around other doctors, that they are not very interested in older patients. My primary has a nurse Crachett (sp probably wrong) who doesn't know half as much as she thinks she knows. From the scowl on her face, I figure she has her panties in a twist. My problem was that I recently went into the hospital because of a blood clot and discovered "hospitalists." Oh boy. This one became obsessed with checking by blood glucose every two hours. I didn't understand what was happening. When I told the nurse I used NovaLog Mix 70/30 and gave myself so many units before breakfast and again before dinner, she replied, "We" do it our way. They sure did. Changed my insulin; changed to "sliding scale.". It is now several weeks later and my blood glucose readings are still messed up. I was given a cardio diet instead of one for diabetics. I've already put an entire pack of syringes in my purse. I had enough insulin and checking equipment to take care of myself, but didn't expect to be put in the hospital, so didn't have enough syringes. Now I'm hearing from diabetics that they do not tell any hospital personnel they are diabetic. They just treat themselves in the bath room. I've looked at the qualifications of hospitalists and found most are GPs; some Internal Medicine doctors. You know how little most GPs know about diabetes, but they think they know everything.

9

that made me very nervous with my first two kids. going in to have them and having no control over my insulin requirements. Before number 3, i got the pump and with 3 and 4, I felt better. and more able to control. With number 5, the doctor was awesome and he just let me wear my pump through the c-section. I didn't have the crazy highs after birth like I had with the other kids, especially my first 2. God that was awful! and they wouldn't let me eat immediately following...and one hospital, when I finally could eat, gave me a tray with a diabetes diet on it. And I was like...I'm hungry, I just labored for hours. Where's the cake? where's the real food? and the poor nurse was like...I have to ask the doctor. Then the doctor came in and I explained to him that I eat real food. LOL :D So he signed off on a regular diet.

10

I also wore my CGM during the c-section, so it was constant acknowledgement that my sugars were where they are supposed to be. i'd move back to Illinois just to have a baby with that doctor again... er, that didnt' sound right. hahaha.