Refusing Insulin Therapy

It’s a familiar refrain among many people with Type 2 diabetes, with varying wording but an idea that remains constant: “I hope I don’t have to go on insulin.” There are a number of reasons why people express a desire to avoid insulin, from a fear of needles to a worry it means they’ve “failed” at managing their diabetes. But until lately, it hasn’t been clear whether these misgivings have much of an impact on when people begin insulin therapy.

A recent study, though, sheds light on just how widespread insulin avoidance is. Published in September 2017 in the journal Diabetic Medicine, the study looked at the notes of 1,501 primary care doctors between 2000 and 2014, looking for records of patients declining insulin therapy using a computer algorithm. They found that out of 3,295 people with Type 2 diabetes whose doctor recommended insulin for the first time, 29.9% initially refused the treatment. Disturbingly, people with an HbA1c level (a measure of long-term blood glucose control) of 9.0% or higher were more likely to refuse insulin — with a refusal rate of 34.2% — than those with an HbA1c level between 7.0% and 8.9%.

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Another troubling outcome of the study is that among people who initially refused insulin, only 38.0% ever changed their minds and began taking it. Within this group, the average delay between an initial insulin recommendation and actually starting on the therapy was 790 days, or over two years. As noted in a Reuters article on the research, the study’s authors emphasize that this long of a delay — especially given the high blood glucose levels of the people involved — significantly increases the risk of diabetes complications like vision problems, kidney disease, and cardiovascular events like stroke and heart attack.

As the Reuters article notes, while previous studies have found that many people with Type 2 diabetes don’t start using insulin when it’s needed, this study was specifically designed to find out how often such a delay was due to patients refusing a recommendation, rather than doctors failing to recommend insulin early enough. One older study, published in 2009 in the journal BMC Endocrine Disorders, found that the average time between first taking an oral diabetes drug and starting on insulin (in the British study population) was 11 years — and that by starting on insulin eight years earlier, people could increase their life expectancy by an average of 0.61 years and reduce or delay diabetes complications.

What’s your experience, if any, with reluctance to start on insulin — have you ever told your doctor you’d rather avoid insulin? If so, what was your doctor’s response, and how long do you think you delayed insulin as a result? If you’ve ever been reluctant to take insulin, why do you think this is the case? If you’ve started taking insulin, how do you feel now about it now, compared with your earlier views and expectations? Leave a comment below!

Want to learn more about insulin? Read “What Does Insulin Do?” “Types of Insulin,” “Everything You Ever Wanted to Know About Injecting Insulin,” “Getting Down to Basals,” and “Selecting an Insulin Program for Type 1 Diabetes.”

  • jillith

    I was diagnosed with pre-diabetes over a year ago and I was at the high end, meaning that I was very close to the number for becoming a diabetic. Although it was not mentioned or recommended, I bought a glucose meter and started looking at my numbers. I believed that I could reverse the numbers on my own and went into a very strict vegetarian, low carb/no carb diet. I only checked in the morning and it seemed that no matter how much I stayed on track with my diet, my numbers were very high, around 140. I read some things about the dawn reaction, or whatever it is called. In any case, the lancelet that I had bought broke and simultaneously, there was a very traumatic incident in my family which made me stop thinking about the glucose numbers.

    Basically, I kind of gave up, as it seemed that I was spending countless hours improving my diet and exercising, to no avail. I expect that an upcoming checkup is going to be a diabetes diagnosis. I decided some time ago that I am not going to take insulin or any other kind of medication. Needles don’t bother me. I just feel like I can reverse this on my own.

    I will say that I have had some concerns about whether or not this could be an unwise decision but now, reading this article, I am even more determined to stay off of meds. According to this article, If I’m not mistaken, if I don’t take the meds, in about 11 years I will have decreased my life expectancy by .61 years. Eleven years of not having side effects from meds will only reduce my life expectancy by less than half of a year? I’m okay with that.

    • RAWLCM

      You are mistaken, re-read the article. The .61 years refers to people who *delayed* taking insulin, but *were* taking oral meds. By not taking any meds at all… essentially ignoring your diabetes and allowing it to go untreated, you are condemning yourself to a short, miserable life and horrific death.

    • kozmick1

      My following comments are my personal reflection on my meandering journey in dealing with the both biological and emotional vagaries of this terrible disease DM2. I am not a clinician. I am not promoting any particular book, regimen or medicinal therapy.This is what worked for me…

      Jillith while I respect your personal views, as I once shared them as well, frankly it sounds to me like you may be somewhat in denial. I too tried every conceivable both medicinal, and yes mental self-deception in finally coming to terms with the reality, that I am, and always will be a type 2 diabetic. Period. And that by taking only oral medications like metformin and glpizide (which can cause pancreas burnout as it did in my case), for over 10 years, because the disease is of a degenerative nature, over time, the disease will overtake most oral med’s efficacy.

      While your morning fasting readings of 140 (the dawn phenomenon) are not particularly high if your average readings were around that or below level, that would translate to about an a 6.1 A1c, If you can maintain that level without clinical intervention you should have a long and healthy life with few if any diabetic complications.

      But my personal journey eventually evolved to a 9.5 A1c even with oral meds. I would not want others who read your particular approach to be lulled into a sense of complacency with your statement about life expectancy increase of only .61 years, to wit:

      “…lowering A1C with a decrease in diabetes-related complications. So, for every one point that you lower your A1C, you’ll lower your complication risk as follows:

      • Eye disease by 76%
      • Nerve damage by 60%
      • Heart attack or stroke by 57%
      • Kidney disease by 50%

      It’s important to realize that if your A1C reflects an average of your blood sugar numbers, your A1C might be 6.7%, but that may be because you’re having a lot of low blood sugars, for example. For this reason, your A1C should be viewed as part of the picture, and not in isolation. Your blood sugar readings, frequency of highs and lows, and quality of life need to be considered as part of your overall diabetes management plan.”

      https://www.diabetesselfmanagement.com/blog/lowering-a1c-levels-naturally/

      It is, for me more of a quality rather than quantity of life issue, as I was beginning to experience many of the very serious complications above. And of course proper diet, exercise and general behavior modification about living with the disease are also critical in managing the disease.

      So, when I did the research for treatment, when I really got deeply into the subject of insulin therapy, I finally realized that I probably had been working at cross-purposes with my health by so stubbornly and yes, blithely dismissing exogenous insulin therapy. After many years glipizide (sulfonereas(sp)) my pancreas was finally burned out. I now consider myself a diabetic 1.5.

      I’ll cut to the chase. here. After doing the research and following the principles of Dr. Richard Bernstein in terms of diet, exercise and yes, insulin therapy in his book Diabetic Solutions (the Bible on DM:), after 6 mos. I can report that with a modest daily dosage of basal insulin injected (about 30unit/day) of long acting levemir detemir (far fewer side effects for me than lantus glargine) my morning fasting is now averaging around 100-120 (down from almost 300). My A1c is approaching sub-clinical levels or <= 6.0. I continue to take metformin at about 2000 mg/day which enhances sensitivity to the additional insulin, making it more bio-available/efficacious–no longer on glypizide. So far, the side effects are, if any, not discernible. Not so much with Lantus with chronic fatigue, depression and joint/muscle pain. Again I am not promoting one med over another…this is my personal experience only.

      By the way, not all glucose meters are equal. The NIH after much testing, recommends the Abbott Freestyle. It correlates more closely with my fasting serum glucose lab tests. The NIH also states that high and low range readings are subject to a variability accuracy of +/- 15%. Worse for some of the other meters tested, so you should confirm you meter is tracking with your lab blood tests before relying on the results.

      But the really good news is that the pen injection technology is very user friendly and literally painless to use. And…I am beginning to see some reversal of complications. Most health care Rx formularies now include pen injection insulin. Your mileage may vary on the copay, but with Medicare Advantage, it runs about $50/mo. OOP for me. Less than that daily cafe latte…a small price to pay for the quality of life it brings…

      So for those who may be frustrated with the failure of oral meds etc. to control and manage your diabetes, I would urge you to research insulin injection. It's never too late…

      Sending best wishes and healing energy to all fellow travelers…

      Be well.
      ~mick

    • barbara

      Jillith, you don’t say what your A1C level is – – that needs to be the real measure. My husband has the ‘dawn’ syndrome affect – we have verified it through early and later sticks (oh he hates me very early in the morning sticking him). So we know that there will be SWINGS and don’t let that worry us. We want is less 7% or less. Sounds to me like you need a new clinician that will go over what you need to be focused on, to help you identify why things may not be working, or changes you can make (are you eating proteins first, for example), are you hydrating enough, etc. Saying you won’t do anything can lead to thing like retinal problems – death isn’t the worst thing that can happen.

  • RAWLCM

    I recently read about a study that seemed to show that pre-diabetics who were treated with fairly high doses of insulin for a time would essentially revert to a healthy pancreas and not develop diabetes at all. The implication was that saving insulin for the “last resort” was not only less effective, but cost the patient an opportunity to avoid developing full-blown diabetes altogether.

  • mick_kozmick

    Apologize if this is a duplicate post as there were some issues with logging in with Diqus…

    My following comments are my personal reflection on my meandering journey in dealing with the both biological and emotional vagaries of this terrible disease DM2. I am not a clinician. I am not promoting any particular book, regimen or medicinal therapy.This is what worked for me…

    Jillith while I respect your personal views, as I once shared them as well, frankly it sounds to me like you may be somewhat in denial. I too tried every conceivable both medicinal, and yes mental self-deception in finally coming to terms with the reality, that I am, and always will be a type 2 diabetic. Period. And that by taking only oral medications like metformin and glpizide (which can cause pancreas burnout as it did in my case), for over 10 years, because the disease is of a degenerative nature, over time, the disease will overtake most oral med’s efficacy.

    While your morning fasting readings of 140 (the dawn phenomenon) are not particularly high if your average readings were around that or below level, that would translate to about an a 6.1 A1c, If you can maintain that level without clinical intervention you should have a long and healthy life with few if any diabetic complications.

    But my personal journey eventually evolved to a 9.5 A1c even with oral meds. I would not want others who read your particular approach to be lulled into a sense of complacency with your statement about life expectancy increase of only .61 years, to wit:

    “…lowering A1C with a decrease in diabetes-related complications. So, for every one point that you lower your A1C, you’ll lower your complication risk as follows:

    • Eye disease by 76%
    • Nerve damage by 60%
    • Heart attack or stroke by 57%
    • Kidney disease by 50%

    It’s important to realize that if your A1C reflects an average of your blood sugar numbers, your A1C might be 6.7%, but that may be because you’re having a lot of low blood sugars, for example. For this reason, your A1C should be viewed as part of the picture, and not in isolation. Your blood sugar readings, frequency of highs and lows, and quality of life need to be considered as part of your overall diabetes management plan.”

    https://www.diabetesselfmanagement.com/blog/lowering-a1c-levels-naturally/

    It is, for me more of a quality rather than quantity of life issue, as I was beginning to experience many of the very serious complications above. And of course proper diet, exercise and general behavior modification about living with the disease are also critical in managing the disease.

    So, when I did the research for treatment, when I really got deeply into the subject of insulin therapy, I finally realized that I probably had been working at cross-purposes with my health by so stubbornly and yes, blithely dismissing exogenous insulin therapy. After many years glipizide (sulfonereas(sp)) my pancreas was finally burned out. I now consider myself a diabetic 1.5.

    I’ll cut to the chase. here. After doing the research and following the principles of Dr. Richard Bernstein in terms of diet, exercise and yes, insulin therapy in his book Diabetic Solutions (the Bible on DM:), after 6 mos. I can report that with a modest daily dosage of basal insulin injected (about 30unit/day) of long acting levemir detemir (far fewer side effects for me than lantus glargine) my morning fasting is now averaging around 100-120 (down from almost 300). My A1c is approaching sub-clinical levels or <= 6.0. I continue to take metformin at about 2000 mg/day which enhances sensitivity to the additional insulin, making it more bio-available/efficacious–no longer on glypizide. So far, the side effects are, if any, not discernible. Not so much with Lantus with chronic fatigue, depression and joint/muscle pain. Again I am not promoting one med over another…this is my personal experience only.

    By the way, not all glucose meters are equal. The NIH after much testing, recommends the Abbott Freestyle. It correlates more closely with my fasting serum glucose lab tests. The NIH also states that high and low range readings are subject to a variability accuracy of +/- 15%. Worse for some of the other meters tested, so you should confirm you meter is tracking with your lab blood tests before relying on the results.

    But the really good news is that the pen injection technology is very user friendly and literally painless to use. And…I am beginning to see some reversal of complications. Most health care Rx formularies now include pen injection insulin. Your mileage may vary on the copay, but with Medicare Advantage, it runs about $50/mo. OOP for me. Less than that daily cafe latte…a small price to pay for the quality of life it brings…

    So for those who may be frustrated with the failure of oral meds etc. to control and manage your diabetes, I would urge you to research insulin injection. It's never too late…

    Sending best wishes and healing energy to all fellow travelers…

    Be well.
    ~mick

    • Pervaiz

      Thanks Mr mick read ur suggestion’s, even good advice ,go through lab test of glucose fasting and random search for actual position of glucose level,with best wishes .

  • Pervaiz

    Read ur article ,I am the patient of type 2 diabetes from 2014 ,I don’t have go on insulin used medicine ,but I feel medicines are not functioning properly my Question should I go on insulin or change my medicines plz replay thankful to u

    • mick_kozmick

      You don’t indicate your A1c or the meds, including dosage, you’re currently taking. Are you monitoring your glucose levels on a daily basis with a meter? If so, the fasting and post prandial readings.

      Diet (daily carbs and type) and exercise/wk and type (aerobic and anaerobic)?

      Please elaborate on “I feel medicines are not functioning properly…”

      • Pervaiz

        Read ur reply medicines Glucophage tab 500 mg + Amaryl tab 2 mg before break fast ,and again one tab gulcophage 500 mg before dinner ,2) I monitor my glucose level before fasting some time 140 some time 170 it fluctuated,how to maintain? 3)six month back I test my A1c 7.4 and cholesterol 99 ,plz I mentioned all fig and hope u will manage proper dose and even change my medicine I am waiting reply from ur side

        • mick_kozmick

          Hi Pervaiz-

          From your response, It would appear that you are taking the management of your DM2 seriously. Good for you.

          Again, I am not a clinician. I am not promoting any book or brand of meds over another. I am only responding with the hope that my experience will enlighten and hopefully be beneficial to you and others in living with this disease. The worst thing about this disease is that it can really mess with your quality of life…including your mind…your emotions, particularly your hope of living a normal and productive life,especially when you think you are doing all the right things, and still can’t seem to control it.

          But the good news is that you can manage and control your BS…but you have to be willing to entertain different approaches! For example for decades the ADA advocated a diet of relatively high GI carbohydrates which only increased the demand for greater insulin. Of course now it is widely held by the credible clinical community that a low carb diet relieves the pancreas of constant dumping of insulin and helps to achieve better control.

          So…a few suggestions:

          1. Read Dr Richard Bernstein book Diabetic Solutions. It can be purchased as an eBook(like Kindle) which makes it searchable and can be annotated with your personal notes with bookmarks etc. In it he discusses the failed conventional wisdom of taking sulfonyreas like Amaryl, as delaying the nevitable insulin injection therapy, in the process burning out the beta cells of your pancreas.

          He also indicates that high glycemic load carbohydrates are the enemy of DM patients. Period. Google glycemic index and load to better understand how carbos like bread, rice and pasta can really spike your BS and which foods like legumes, proteins and yes, fats can substituted for high GI carbos to help maintain more healthy BS levels. Dr Bernstein recommends no more than 100 grams of carbos daily. I try to shoot for low GL of less than 50 grams and notice a major decrease in BS levels when doing so.

          Check out nutrition data dot com for the GL for every food.

          2, You might want to talk to your clinician about increasing your dosage of metformin to about 2000 mg/day (the recommended ceiling). 1000 mg AM an a hour before your meal, and 1000 mg PM an hour before dinner.

          3. I’d also suggest you look into basal(long acting) insulin injection therapy like levemir or lantus with your clinician. After 10 years of being angry, frustrated and feeling hopeless, I was not able to manage and more importantly control my DM until i started with Levemir pen injection therapy.

          The pens come in 300 units each, and are very easy to use and with an 8mm long (with the thickness of a human hair) needle when injected in the adipose tissue in your waistline is painless. The whole process takes me less than 5 min. AM and PM.

          Also systematically record your readings so you can chart the efficacy of dosage and report the results to your clinician.

          This would replace the Amaryl. Start out slowly and titrate (increase) your dosage no more than 2 units every three days while monitoring your BS levels. I started at 10 units/day and am now at stable dosage of 30 units/day. I find that split dosage of 10 units AM and 20 units PM before bedtime works best for me and minimizes the so-called dawn phenomenon to a fasting level of an average about 100-110 for the past 6 mos. Your mileage may vary. Go slowly…as too sudden of a drop can cause other problems like vision complications etc.

          Sending best wishes to you in your journey…

          Above…be well…have fun and have a good laugh OUTLOUD everyday!

          ~mick

        • mick_kozmick

          I’m reposting this because earlier postings were classified as spam. Hopefully Disqus will get this fixed.

          —————-

          Hi Pervaiz-

          From your response, It would appear that you are taking the management of your DM2 seriously. Good for you.

          Again,
          I am not a clinician. I am not promoting any book or brand of meds over
          another. I am only responding with the hope that my experience will
          enlighten and hopefully be beneficial to you and others in living with
          this disease. One of the worst thing about this disease is that it can
          really mess with your quality of life…including your mind…your
          emotions, particularly your hope of living a normal and productive life,
          especially when you think you are doing all the right things, and still
          can’t seem to control it.

          But the good news is that you can
          manage and control your BS…but you have to be willing to entertain
          different approaches! For example for decades the ADA advocated a diet
          of relatively high GI carbohydrates which only increased the demand for
          greater insulin. Of course now it is widely held by the credible
          clinical community that a low carb diet relieves the pancreas of
          constant dumping of insulin and helps to achieve better control.

          So…a few suggestions:

          1.
          Read Dr Richard Bernstein book Diabetic Solutions. It can be purchased
          as an eBook(like Kindle) which makes it searchable and can be annotated
          with your personal notes with bookmarks etc. In it he discusses the
          failed conventional wisdom of taking sulfonyreas like Amaryl, as
          delaying the Inevitable insulin injection therapy, in the process
          burning out the beta cells of your pancreas.

          He also indicates
          that high glycemic load carbohydrates are the enemy of DM patients.
          Period. Google glycemic index and load to better understand how carbos
          like bread, rice and pasta can really spike your BS and which foods like
          legumes, proteins and yes, fats can be substituted for high GI carbos
          to help maintain more healthy BS levels. Dr Bernstein recommends no more
          than 100 grams of carbos daily. I try to shoot for low GL of less than
          50 grams and notice a major decrease in BS levels when doing so.

          Check out nutrition data dot com for the GL for every food.

          2, You might want to talk to your clinician about increasing your dosage of Glycophage (metformin) to about 2000 mg/day (the recommended
          ceiling). 1000 mg AM an a hour before your meal, and 1000 mg PM an hour
          before dinner.

          3. I’d also suggest you look into basal(long
          acting) insulin injection therapy like levemir or lantus with your
          clinician. After 10 years of being angry, frustrated and feeling
          hopeless, I was not able to manage and more importantly control my DM
          until i started with Levemir pen injection therapy.

          The pens come
          in 300 units each, and are very easy to use and with an 8mm long (with
          the thickness of a human hair) needle when injected in the adipose
          tissue in your waistline is painless. The whole process takes me less
          than 5 min. AM and PM.

          Also systematically record your readings so you can chart the efficacy of dosage and report the results to your clinician.

          This
          would replace the Amaryl. Start out slowly and titrate (increase) your
          dosage no more than 2 units every three days while monitoring your BS
          levels. I started at 10 units/day and am now at stable dosage of 30
          units/day. I find that split dosage of 10 units AM and 20 units PM
          before bedtime works best for me and minimizes the so-called dawn
          phenomenon to a fasting level of an average about 100-110 for the past 6
          mos. Your mileage may vary. Go slowly…as too sudden of a drop can
          cause other problems like vision complications etc.

          Sending best wishes to you in your journey…

          Above…be well…have fun and have a good laugh OUTLOUD everyday!

          ~mick

      • Pervaiz

        Continued 4) daily I walk 2 kilometers,even 10 minutes of exercises, including aerobic ,yoga,5) I always balance died maximum eat lady finger including Green vagitables ,milk,cereals ,