Do I need a new Endo?

Type 1 and LADA
1

Hi, Nice to meet you all, I am looking for some shared feedback

My story (short version) - I was diagnosed in 1993 with adult onset type 1. I am now 49 years old. The first few years I ran AC1’s of 6%, then I got lazy, life happened, and I just stopped managing it. My A1Cs declined. The past 5 years they have been rising, 8%-10% because of my own neglect. I also have no complications. In April of this year I decided that I was done being fearful of the complications that would surely come soon, I made the decision to micro manage my diabetes. I started on a KETO diet and within 3 days of starting I had to reduce my daily basal from 35untils to 15units. And my insulin sensitivity improved.

Today - I saw my doctors NP yesterday and they did a quick A1C and it was… 5.6% :slight_smile::slight_smile::slight_smile::slight_smile:

And, I have lost 20lbs…

My current devices are: Animas Vibe Pump, Dexcom G4, One Touch Verio

I was so happy with my new A1C, but surprised when I saw this note from my doctor. I was expecting Kudos, and instead I found a brick wall.

Doctors comment "I did see that your A1c is down to 5.6%. I am happy that you are getting your blood sugars down. However, that A1c is actually lower than we want to aim for. The Accord trial randomized patients with insulin dependent diabetes to a target A1c of either 6.5-7.0% or less than 6.5%. The patients who were targeted for A1c less than 6.5% had higher mortality. The study was actually stopped early due to risk of death in this group. "

Really? Does she think I am going to believe this? Does anyone have any references for me on this study so that I can educate my doctor? I am finding some old stuff written but I am not sure how this applies to year 2016.

From what I have read, I am seeing that doctors would rather you die from high blood sugar vs low blood sugar, and that they are afraid of lawsuits.

Has anyone else experienced this from their doctors? Can you share stories please?

Questions I have been asking myself:

  1. What if I do not agree with what the doc said, and I go against recommendations?
  2. What if I continue to improve (lower my A1C) and the doc refuses to write prescriptions?
  3. Are there any Endos out there that support normal A1C’s?
  4. Has anyone else been told this and if so what was their experience?
  5. Has anyone challenged their doc on this topic?
  6. Has anyone ever asked their doc to read Dr. Bernstein’s book?

I am NOT changing my diet, I love it, and I love the control it gives me over my blood sugars. I refuse to give in to the herd.

Please share your feedback with me!

Frustrated,
Sandra
My Stuff: Animas Vibe Pump, Dexcom G4, One Touch Verio

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You might find this article at Blood Sugar 101 a good starting point in understanding what the ACCORD study did not show::

http://www.phlaunt.com/diabetes/35169265.php

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Helpful, thank you

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  1. What if I do not agree with what the doc said, and I go against recommendations?
    If my assessment is that the recommendation is wrong then I don’t follow it.

  2. What if I continue to improve (lower my A1C) and the doc refuses to write prescriptions?
    This would be a reason to switch.

  3. Are there any Endos out there that support normal A1C’s?
    My endo has no problem with my A1C which is around 5.0%. My goal is 4.99%. My lowest A1c was 4.6%.

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Nice job!
I want to hear from people that DO have good Endos that can say what you have said

“My endo has no problem with my A1C which is around 5.0%. My goal is 4.99%. My lowest A1c was 4.6%.Reply as linked Topic”

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I don’t see an endo; I manage my diabetes with my PCP’s assistance. But I’ll answer the questions in case it may prove helpful.

What if I do not agree with what the doc said, and I go against recommendations?
If I truly disagree with a recommendation, I explain why. A good example was when he urged me to start taking a statin and I declined. I explained my reasons why; he accepted the explanation and put a notation in the chart that it was “at patient request” so he would not get downrated on his next review.

What if I continue to improve (lower my A1C) and the doc refuses to write prescriptions?
Nothing like that has ever happened. If it did, I would find a new doctor.

Are there any Endos out there that support normal A1C’s?
Yes. Depending on where you live, it might take some searching and interviewing to find one, but they are there. Many TuD members have them and I’m sure some will chime in here.

Has anyone ever asked their doc to read Dr. Bernstein’s book?
I gave him a copy. Not sure whether he’s read it.

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[quote=“David_dns, post:7, topic:53761”]
What if I do not agree with what the doc said, and I go against recommendations?If I truly disagree with a recommendation, I explain why.

The only issue I see with this is, if I have to educate my Endo are they even qualified to be an Endo?

Has anyone ever asked their doc to read Dr. Bernstein’s book?I gave him a copy. Not sure whether he’s read it.
**[/quote]**LOL

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As it was explained to me, the rationale of this recommendation is that as we get older and our years of living with diabetes increase, our hearts and other organs take a bit of a beating over time. While there are certainly some with A1C’s in the 5’s with very stable BG and in range most of the time, A1C’s that low are more often accompanied by lots of lows or, worse, some dangerous lows. These can make a “seasoned” person more vulnerable to heart attack and other episodes as we age, which can in turn result in death. So while they like to see it <6.5 whenever possible, the mid-5’s might concern your endo that you are at risk for these issues. Try talking this out with her to review your overall numbers and see if you can get on the same page. Perhaps she has some valid concerns that you can address. If not, then by all means you might want to seek out an endo that is less rigid about recommendations.

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This is admittedly an unscientific sample, so evaluate it with whatever degree of skepticism seems right to you.

Now that the disclaimer is out of the way . . .

In my conversations with health care professionals, the rationale that is stated overwhelmingly—in fact almost solely and exclusively—is the simple fear that a layman, i.e., patient, will experience large numbers of serious lows if they aim for too low an A1c. This is probably part of the reason Bernstein used to get booed when he stood up at medical conferences and said “diabetics are entitled to normal blood sugars”.

While the concern is probably legitimate and appropriate for some (perhaps many) patients, it isn’t necessarily appropriate for the committed, knowledgeable, conscientious ones. A good doctor should be a good enough listener to tell the difference. Yet another instance of one-size-fits-all thinking.

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11

A1C is a very crude indicator. Time in range or BG standard deviation are much more meaningful. I agree that a T1 who manages her diabetes with urine strips only should not aspire an A1C in the 5s. With a pump and a CGM on a low carb diet an A1C in the low 5s is a reasonable and desirable goal.

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I agree with @Helmut. A1c alone does not provide a full picture of hypoglycemia risk. A much better measure is time in range or TIR combined with the A1c. When I faced this very same issue with my endo, I brought her a Dexcom report that showed what percentage of time I spent in my target range, as well as the hypo and hyper ranges.

A key measure that has not been discussed here is your blood glucose variability. While an A1c is simply an indicator of your average BG, the very same average can be made up of wildly disparate lows and highs or an average comprised of a more tightly packed data set.

Your doctor is right. A low average combined with a highly variable blood glucose level will expose you to risky hypos. Alternately, a low average combined with a lowly variable BG level doesn’t expose you to hardly any of the risk s/he fears.

If you can spend 80-90% of your time in range and less than 5% of your time hypo, that seems like a rational and safe proposition.

Once I pointed this out to my endocrinologist, she backed off (mostly) with the reflexive hypo warnings based on A1c alone.

BG variability is a big deal. Low variability (often expressed as standard deviation) means your blood sugar levels drift up and down and don’t often skyrocket or nose-dive. I aim for a standard deviation of less than 30 mg/dl.

For example, a standard deviation of 30 mg/dl means that about 2/3 of your blood sugar data points fall within 30 mg/dl of your average. An A1c of 5.6% is equivalent to an average BG of 114 mg/dl. If your SD was 30 mg/dl, that means that about 2/3 of your blood sugars are within 114 mg/dl +/- 30 mg/dl or in the 84-144 mg/dl range – about as safe as it gets! Contrarily, if your SD were 70 mg/dl with an average of 114 mg/dl, 2/3 of your BG data would fall between 44 and 184 mg/dl, a much different situation.

What is your standard deviation? If you are eating a ketogenic diet, then I suspect your SD may be 20 mg/dl or less. Anything under 30 is a winner in my judgment.

Try adding BG variability to the A1c discussion with your doctor. S/he’s making the wrong assumption that your BG variability is swinging wildly and with a low average you could be in danger. Set the record straight if the doctor can’t surmise that from all the data you have available via your CGM. If the doc can’t or refuses to see the truth of low BG variability mitigating the hazard of a low A1c, then it may be time to find a new doctor.

You are doing an amazing job with managing your blood glucose level. Do not let some reflexively hypo-phobic defensive medicine doctor screw it up!

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Interesting take on this, worth looking into, ty

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Yes, they seem to all be concerned about lows, but they (the NP) are not looking at my Dexcom graph to see that I am not double arrow down anymore at all, it’s all steady

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my SD is 18-20

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Well said, and good advice thank you! I will have to bring this to her attention, I think the NP had issues with downloading my Dexcom data and my pump CGM data. Yes, my SD is about 18-20, this is a number I was unfamiliar up until last month when I read about it. I have never had a doc mention it, ever. It was probably 200 in the past…
Here is a link to a sample of my one week, http://www.sandramarie.tech/

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I looked at the sample. Congratulations!!! You are doing everything right. I think you can teach your doctor a thing or two.

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Thank You!

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What is your target range? It looks like 80-140. I don’t count a value as hypo unless it’s < 65. That’s the level I start to get hypo symptoms. That’s just me.

With such a low SD (18-20), your up and downtrends have a low delta (rate of change). Since you’re wearing a CGM these lows probably don’t surprise you often. With a SD of 20 and an A1c of 5.6%, that means you spend about 67% of your time between 84 and 134 mg/dl. That is excellent control!

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I did the dr. B thing and had way too many lows and I felt like I was starving- I still feel that way but not nearly as bad- it had nothing to do with lack of attention, it’s just the way my body fluctuates and my sensitivity.

If you can show records that you are very stable, which it seems you are and not having lows it shouldn’t be a problem. Besides which if you’re prone to lows they will be often be worse with a higher carb diet and more insulin.

I don’t think too many endos support normal a1c because of the reasons you mentioned, but again, you are very stable so it should be ok with your doc with some explanation.

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I agree - you’ve obviously figured it out for you.
Here’s a thread on the subject of (mostly) good control: https://forum.tudiabetes.org/t/flatliners-club