A Field Guide to Identifying the Misdiagnosed Person with Type 1 Diabetes

They are adults who come in droves to the diabetes online community, they write about how they are puzzled how they got Type 2 diabetes, when they are young and thin and athletic[1].  Sometimes they are middle-aged and no longer at fighting weight.  Sometimes they are older or elderly.  They have been given Type 2 oral medications to control their blood sugar, but the oral meds are not working despite a very low carbohydrate diet and lots of exercise.  They may mention that they have autoimmune diseases such as Hashimoto’s Disease (hypothyroidism) or celiac disease, and that autoimmune diseases run in their families, and that their grandmother/fill-in-the-blank had Type 1 diabetes.  Their health is deteriorating, but their doctors just insist that they are not correctly following the doctor’s prescribed program.  Before there was a diabetes online community, I met these same people (people with diabetes or PWDs) at other diabetes-related events.  Some of them already had serious complications.  Who are these people and what is going on?

Who are these people?  These people are misdiagnosed Type 1 diabetics.  They have been misdiagnosed as having Type 2 diabetes, when in fact they typically have Type 1 autoimmune diabetes (sometimes called LADA (latent autoimmune diabetes in adults) or Type 1.5).  But because they are adults, and because doctors have bought into the myth of Type 1 being a childhood disease, they have been given a Type 2 diagnosis strictly because of age not etiology.  And it is not just people with slowly progressive Type 1 diabetes who are misdiagnosed:  even adults with rapid-onset Type 1 diabetes presenting in diabetic ketoacidosis (DKA) get misdiagnosed.  Type 1 diabetes and Type 2 diabetes are altogether different diseases, with different genetics, causes, treatments, and potential cures. The high blood sugars that result from trying and failing with pills for Type 2 diabetes, on a person who in fact has Type 1 diabetes, causes agony and suffering, not to mention hastening the complications of diabetes and potentially death due to DKA (diabetic ketoacidosis).  Another very dangerous situation is when the stress of pregnancy is “the straw that broke the camel’s back” and pushes a woman over the edge into overt Type 1 diabetes.  Most medical literature only associates gestational diabetes with Type 2 diabetes, yet fully 10% of women with GDM have the autoimmune markers for Type 1 diabetes.  Misdiagnosis can lead to fetal death.

What is going on?  Against all scientific evidence, many doctors insist on diagnosing an adult as having Type 2 diabetes when simple and relatively inexpensive testing (autoantibody testing (GADA, ICA, IA-2, IAA, ZnT8) at full price less than $1000) could give a definitive diagnosis.  The c-peptide test may be useful but is not definitive.  We are not talking about one incompetent doctor, one bad seed, who is misdiagnosing PWDs, we are talking about many, many doctors throughout the world.

Why do doctors and the medical community cling to the myth of Type 1 diabetes being a childhood disease, despite all evidence to the contrary, and despite the fact that misdiagnosis results in horrific suffering and terrible outcomes for human beings who could thrive if given the correct treatment?  What happened to the Hippocratic Oath (“First do no harm”)?  This is a question for a psychologist to answer, since the doctors are acting in opposition to all scientific and medical evidence.  However, we do know that scientific communities can be surprisingly resistant to new ideas or data that do not fit the accepted model, in this case the “juvenile diabetes” model.  And here we are not talking about just a few people with adult-onset Type 1 diabetes, we are talking about three times [or more] the number of people with childhood-onset Type 1 diabetes[2].

Organizations such as the American Diabetes Association (ADA) remain part of the problem of the entrenchment of the myth that Type 1 diabetes is a childhood disease.  In the United States, ADA is the "go to" place when people want information on diabetes, including the mainstream media.  A prime example of the way that ADA does a terrible disservice to people with adult-onset Type 1 diabetes is on their website, where ADA states, “Type 1 diabetes is usually diagnosed in children and young adults, and was previously known as juvenile diabetes. Only 5% of people with diabetes have this form of the disease.” Yet ADA’s “Diabetes Forecast” magazine had a recent article in which they discussed adult-onset Type 1 diabetes and the problem of misdiagnosis as Type 2 diabetes[3] and “The Type 1 Diabetes Sourcebook” published by ADA and JDRF in 2013 says that adult-onset Type 1 diabetes is more common than childhood-onset Type 1 diabetes, and says that about 10% of people with “Type 2” diabetes are misdiagnosed and have Type 1 diabetes.

If the diabetes online community can figure out what is going on and can help get people correctly diagnosed and correctly treated with insulin therapy, why can’t the medical community?  What is holding doctors back?

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[1] Not all people with adult-onset Type 1 diabetes are young adults, Caucasian, thin, and athletic.  Those are just the people that are easier to identify.  Adult-onset Type 1 diabetes affects people of all ages, ethnicities, weights, and athletic abilities.

[2] Type 1 Diabetes in Adults: Principles and Practice (Informa Healthcare, 2008), page 27.

[3] “Diagnosing Type 1 in Adults:  Why Type 2 Misdiagnoses Abound, and What You Can Do About It” Diabetes Forecast, September 2015.

Yoga and Diabetes: Seeking Balance

Note: An abbreviated version of this blog was published by Rachel Zinman on her excellent website Yoga for Diabetes.

I started practicing yoga in 1994, six months before I noticed my first symptoms of diabetes. When I was newly diagnosed with Type 1 diabetes, at the age of 35, I was in extreme despair—I thought my life was ruined. But yoga saved my life then by allowing me some space and freedom from constant thoughts about my disease, and yoga continues to save my life today by helping me stay calm and focused despite the daily grind of self-care that those of us with Type 1 diabetes must do. I recommend yoga to anyone who has to live with the stress of chronic illness.

Yoga is a practice that uses poses, breathing techniques, relaxation, and meditation to balance mind, body, and spirit. In the West, hatha yoga, which involves stretching the body and forming different poses while keeping breathing slow and controlled, is most commonly practiced.  Yoga has much to offer people with diabetes, and probably its greatest benefit is stress reduction.  Diabetes is exacerbated by stress, and yoga is a useful tool to reduce stress.  It can both set the stage for better overall health and also reduce the stress associated with the myriad of details necessary for our daily diabetes care.  High levels of the stress hormones adrenaline and cortisol raise blood glucose levels, and thus reducing stress is integral to good blood glucose control.  Yoga cannot cure diabetes, but the many benefits of yoga (stress reduction, increased sense of well-being, discipline, and focus) can help make the disease more manageable and have beneficial impacts on blood glucose control and on our lives.

For me, exercise, yoga, and meditation are my “magic pills.”  If only it were so easy as to pop a pill!  To give you an idea of my routine, I attend a weekly class with a wonderful, experienced teacher.  I also have a morning home yoga and meditation practice.  My simple back care yoga routine plus meditation gets my day off to a good start.  Yoga has an immediate physical and practical impact on my health but it also affords me an emotional benefit over time.  Below are some of my tips for practicing yoga with diabetes:

Asanas:  As with any physical activity, one must listen to and respect what your body tells you in the moment.  It can be risky to practice some poses, for example crow pose (bakasana), when you have low blood sugar or even close to low blood sugar.  Also, if you have diabetic complications such as retinopathy, many inverted poses are contraindicated.  This is where a good yoga instructor (or doctor or your own research) is worth his/her weight in gold.  Come to class early and don’t be afraid to talk with the teacher and ask questions.

Insulin pumps and continuous glucose monitors (CGMs):  I almost always turn my insulin pump down for yoga class.  I am a “blood sugar burner,” meaning physical activity drops my blood sugar significantly, and I need to be careful to avoid hypoglycemia.  I always have rapid-acting glucose handy.  For a particularly vigorous yoga class, I turn my pump down by 80% at least one hour prior to class and for the duration.  For my regular yoga class, I turn my pump down by 50% one hour prior to class and for the duration.  I place my CGM on a block or some other raised space so that no one steps on it.

Meditation:  Many people say that they can’t meditate because they can’t keep their minds still.  Thoughts end up swinging through their mind like monkeys swinging from branch to branch in the jungle.  But virtually everyone will have “monkey mind!”  The point is to meditate, to be mindful, and to be in the present moment.  I practice a very simple style of meditation, breath meditation or Insight Meditation; meditation teacher Sharon Salzberg is my guide and resource.  There are countless tools to help you with your meditation practice.  Just find a quiet space, and give it a try.  Even a moment of quieting your mind can bring you a sense of peace.

Magic Pixie Dust:  Sadly, within the yoga and meditation communities there can exist “magical thinking” that is harmful to those of us with Type 1 diabetes, or any other serious disease.  Yoga cannot cure us; yoga cannot get us off of exogenous insulin.  A yoga teacher once yelled at me in the middle of class and said “Why do you have to wear that [my insulin pump], why can’t you take it off for class, how can you do inverted poses with your insulin pump on?”  This kind of ignorance and lack of compassion can push people away from yoga when it could be a beneficial part of their healthy lifestyle.  Because of that incident, I now do more to inform yoga teachers about my Type 1 diabetes and the medical devices I use to manage it (insulin pump and continuous glucose monitor).  Before a recent yoga and meditation retreat, I let the teachers know I have Type 1 diabetes, and let them know that my devices are on vibrate mode, but still make some noise.  I received the most compassionate response.  Yoga should foster compassion within us and for others; teachers who truly care for their students demonstrate compassion and not judgment.

If you are new to yoga, the best way to start a yoga practice is to find a competent teacher with whom you feel comfortable, and whose style speaks to you.  Many yoga studios now offer Yoga Basics classes or an introductory yoga series of classes.  These “yoga training wheels” classes can be especially beneficial for those who have no experience with yoga, because even beginning classes can be too advanced for those just starting out.

About Type 1 diabetes:  Type 1 diabetes is an autoimmune disease in which an immune-mediated process destroys the beta cells of the pancreas (the insulin-producing cells are destroyed).  People with Type 1 diabetes depend on exogenous insulin for survival, and there is no cure.  Although Type 1 diabetes used to be called “juvenile diabetes,” it is now recognized that people of all ages acquire Type 1 diabetes, including the elderly.  More than 85% of people with Type 1 diabetes are adults.

Yoga and Meditation Resources:  There are so many excellent resources, but here are a few of my favorites:

• Yoga for Healthy Aging Blog (http://yogaforhealthyaging.blogspot.com; by my forever friend and yoga buddy, Nina Zolotow).
• Moving Toward Balance:  8 Weeks of Yoga. Rodney Yee and Nina Zolotow.  Rodale, 2004.
• The Yoga Tradition:  Its History, Literature, Philosophy, and Practice. Georg Feuerstein.  Hohm Press, 2001.  [This is a weighty book, if you want to delve deeper into the history and philosophy of yoga]
• Real Happiness: The Power of Meditation.  Sharon Salzberg.  Workman Publishing, New York, 2011.
• Yoga as Medicine: The Yogic Prescription for Health and Healing.  Timothy McCall MD. Bantam Dell, 2007.
• Full Catastrophe Living:  Using the Wisdom of Your Body and Mind to Face Stress, Pain, and Illness.  Jon Kabat-Zinn.  Bantam, 2013.
• Excellent yoga classes, including classes taught by Tias Little, are available at YogaGlo (www.yogaglo.com).

LADA Awareness Week 2015

LADA Awareness Week was started by Diabetes Hands Foundation and dLife in 2010(?), to bring awareness to adult-onset Type 1 diabetes.  In 2015, LADA Awareness Week is October 19-26.  Although the vast majority of new-onset Type 1 diabetes occurs in adults, most are misdiagnosed, often with tragic consequences (typically early onset of diabetic complications).  Almost always, a person will be misdiagnosed as having Type 2 diabetes, an altogether different disease. The September 2015 issue of Diabetes Forecast had two articles about adult-onset Type 1 diabetes (“Diagnosing Type 1 in Adults:  Why Type 2 Misdiagnoses Abound and What to Do About It” and “6 Tests to Determine Diabetes Type”).  Although we have come very far in terms of awareness and having resources available (for example, JDRF has an Adult Type 1 Toolkit and has teams of volunteers who meet with newly diagnosed T1D adults), we still have so far to go.

Here are some basic facts:  each year, about 15,000 children are diagnosed with Type 1 diabetes, and slightly more adults are diagnosed with rapid-onset Type 1 diabetes.  Study after study has shown that about 10% of people diagnosed with Type 2 diabetes are autoantibody positive, meaning that they have Type 1 autoimmune diabetes but have been misdiagnosed.  According to the ADA, in 2012 about 1.7 million people over the age of 20 were diagnosed with diabetes, thus a percentage of that large number have slowly progressive Type 1 diabetes/LADA that has been misdiagnosed as Type 2 diabetes.  LADA eclipses childhood onset Type 1 diabetes by large numbers.

Despite the vast numbers of LADAs, misconceptions and misinformation specifically about LADA and in general about Type 1 diabetes abound.  Here are examples of misinformation:

• dLife labels LADA “a rare form of diabetes”  [Childhood onset Type 1 diabetes is “rare,” not LADA].
• ADA, on their website, says, “Type 1 diabetes is usually diagnosed in children and young adults, and was previously known as juvenile diabetes. Only 5% of people with diabetes have this form of the disease.”  Yet “The Type 1 Diabetes Sourcebook,” published by ADA and JDRF, says that LADA is more common than childhood onset Type 1 diabetes, and says that 10% of people with “Type 2” diabetes are misdiagnosed and have Type 1 diabetes.  So Type 1 diabetes is most commonly diagnosed in adults and potentially represents about 15% of all cases of diabetes.

Another very dangerous situation is when the stress of pregnancy is “the straw that broke the camel’s back” and pushes a woman over the edge into overt Type 1 diabetes.  Most medical literature only associates gestational diabetes with Type 2 diabetes, yet fully 10% of women with GDM have the autoimmune markers for Type 1 diabetes.  Misdiagnosis can lead to fetal death.

LADA awareness initiated in the patient population and is driven by patients.  It is time that the medical community wake up and acknowledge adult-onset Type 1 diabetes, and let’s dispel the myth that Type 1 diabetes is a childhood disease!

Early Insulin Therapy in Adult-Onset Type 1 Diabetes

There is substantial evidence that early insulin treatment preserves remnant beta cell mass, and also lowers the risk of complications and early death.  Sadly, complications and early death are more common amongst those with slowly progressive Type 1 diabetes (aka latent autoimmune diabetes in adults or LADA), as opposed to rapid-onset Type 1 diabetes, and I believe that is because of the lack of early, intensive treatment with insulin.  Medical doctors already know how to effectively treat Type 1 diabetes in children, teenagers, and young adults; that excellence in care should also be applied to adults with new-onset Type 1 diabetes (which of course includes LADA).

There is much debate about the timing and importance of initiation of insulin therapy in people with adult-onset autoimmune diabetes. LADA is defined as not requiring insulin for 6 months, but this is based on physicians’ clinical judgment not disease process and seems specious as Frederick Allen, before the discovery and first use of insulin on a patient with diabetes in 1922, kept Type 1 diabetics (many of them children) alive often for five years or more on a starvation (low carb) diet. Some scientists state that early insulin use has no advantages; yet patients with Type 1 report great relief in getting a correct diagnosis and insulin therapy because they feel so much better. Several published studies have shown that the misdiagnosed (Type 1s misdiagnosed as having Type 2 and not treated with insulin) have a much more rapid onset of diabetic complications. Rapid onset Type 1 diabetes should be treated by intensive insulin therapy as soon as possible; however, if a person has slowly progressive Type 1 diabetes and has good endogenous insulin production, it may be possible that exercise and a low carb diet can keep the person in control for some time. But insulin therapy should not be avoided due to fear. I find it especially worrisome that many people, particularly women, fear initiating insulin therapy because they have heard that insulin causes weight gain--one's health and well-being should take precedence. Also, I and most Type 1s I know did not gain weight on insulin.

In the Diabetes Control and Complications Trial (DCCT), all subjects with adult-onset Type 1 diabetes had some residual beta cell function (Bernard Zinman MD, DCCT, personal communication).  Those who were assigned to the intensive insulin therapy group were slower to lose residual beta cell function than the conventional therapy group (risk reduction 57%), and the DCCT researchers stated, "Intensive [exogenous insulin] therapy for type 1 diabetes helps sustain endogenous insulin secretion, which, in turn, is associated with better metabolic control and lower risk for hypoglycemia and chronic complications" (Footnote 1).  Clearly, early intensive insulin therapy has enormous benefit.  LADA researchers in Japan (Kobayashi et al, 2002 (Footnote 2)) have conclusively demonstrated that better preservation of beta cell function occurs with exogenous insulin compared to sulfonylureas, and that sulfonylureas hasten beta cell destruction.  Researchers' results suggest that small doses of insulin effectively prevent beta cell failure in slowly progressive Type 1 diabetes, better glycemic control is achieved, and less proliferative retinopathy occurs (Footnote 3). In other words, doctors may inappropriately use Type 2 therapies (sulfonylureas) in new-onset Type 1 diabetes, but all scientific studies indicate that the correct therapy is intensive insulin therapy.

The correct treatment for Type 1 diabetes, at whatever age it is diagnosed, is exogenous insulin as early as possible, to control glucose levels, prevent further destruction of residual beta cells, reduce the possibility of diabetic complications, and prevent death from diabetic ketoacidosis (DKA).  Many adults can prolong the “honeymoon” period (the time when some remnant beta cells are still producing insulin) with intensive insulin therapy (including using an insulin pump).  If a pump seems like too much or insurance will not cover one, MDI (multiple daily injections) is good.  Early insulin use and prolonging the honeymoon period will make it easier to control diabetes and greatly reduce the risk of diabetic complications, thus making for a better life.

Some in the medical community believe that people with LADA can be treated initially with drugs for Type 2 diabetes (sulfonylureas).  The fact is that in the 1970s in the United States, children with Type 1 diabetes were sometimes initially treated with sulfonylureas for up to 1 year, to keep the child off of insulin injections for as long as possible.  That practice was abandoned, as it should be for people with adult-onset Type 1 diabetes.  I also believe that there is irrational psychological thinking in effect (as opposed to evidence-based medicine), in which doctors/medical community want to believe that LADA is somehow different from childhood Type 1 diabetes, and they want to treat LADA as if it were Type 2 diabetes.  LADA is not Type 2 diabetes, it is a completely different disease, and people with LADA should not be treated as if they have Type 2 diabetes. Type 2 drugs (sulfonylureas) are not likely to be effective, in any case.  As stated in the Type 1 Diabetes Sourcebook (ADA/JDRF, 2013) “starting insulin is the mainstay of therapy” for adults who present acutely with Type 1 diabetes as well as those presenting more indolently.  Regarding adult-onset Type 1 diabetes, The Type 1 Diabetes Sourcebook also says, “for those with early Type 1 diabetes, expert opinion recommends either low doses of basal insulin to prevent DKA or prandial insulin to prevent postprandial hyperglycemia.”

Dr. Richard Bernstein, author of The Diabetes Solution, believes the honeymoon can be prolonged indefinitely. He says (page 104): "Based upon my experience with the fair number of type 1 diabetics I've treated from the time of diagnosis, I'm convinced that the honeymoon period can be prolonged indefinitely. The trick is to assist the pancreas and keep it as quiescent as possible. With the meticulous use of small doses of injected insulin and with the essential use of a very low carbohydrate diet, the remaining capacity of the pancreas, I believe, can be preserved."

So in summary, there is substantial evidence that early, intensive insulin intervention preserves beta cells and prolongs the honeymoon.  It should be the standard of care for all people with new-onset Type 1 diabetes.

NOTE 1:  Some of the newer drugs for Type 2 diabetes may be beneficial for those with Type 1 diabetes.  Metformin is useful for those people with Type 1 diabetes who develop insulin resistance.  GLP-1 drugs and SGLT2 Inhibitor drugs may be beneficial (Footnote 4).  But exogenous insulin is the standard of care for people with Type 1 diabetes.

NOTE 2:  Some people whose Type 1 diabetes is slowly progressive and is caught early can go without exogenous insulin for a time.  Dr. Anne Peters, the acclaimed endocrinologist and co-editor of The Type 1 Diabetes Sourcebook, is positive for four autoantibodies, although she does not yet have symptomatic Type 1 diabetes.  Dr. Peters is using liquid metformin and Ozempic (a GLP-1 receptor agonist) to try to preserve her beta cells.  Also, a recent study (IK Hals et al, Diabetes Obes Metab 2019;1-9) found that exogenous insulin and the DPP-4 inhibitor sitagliptin worked equally well to preserve beta cell function in people with slowly progressive Type 1 diabetes.  For those that are not on exogenous insulin, it is a good idea to have some on hand in case one's blood sugar rises rapidly due to illness, etc. (to prevent possible DKA).

Footnote 1:
Effect of Intensive Therapy on Residual β-Cell Function in Patients with Type 1 Diabetes in the Diabetes Control and Complications Trial: A Randomized, Controlled Trial.  Ann Intern Med. 1998;128(7):517-523. 

Footnote 2:
Kobayashi et al, 2002.  Insulin Intervention to Preserve β Cells in Slowly Progressive Insulin-Dependent (Type 1) Diabetes Mellitus.  Annals of the New York Academy of Sciences.  Volume 958, IMMUNOLOGY OF DIABETES: AUTOIMMUNE MECHANISMS AND THE PREVENTION AND CURE OF TYPE 1 DIABETES.  Pages 117–130.

Footnote 3:
Maruyama et al, 2003.  Multicenter prevention trial of slowly progressive Type 1 diabetes with small does of insulin (the Tokyo Study): preliminary report.  Ann NY Acad Scie, 2003 Nov; 1005:362-9. 

Footnote 4:
Euglycemic DKA can occur in persons with Type 1 diabetes who are taking SGLT2 Inhibitor drugs.  Exercise caution!  Dr Anne Peters discusses protocols to avoid euglycemic DKA in this video.                                                                                                                  

Autoimmune Gestational Diabetes

About 10% of women with gestational diabetes mellitus (GDM) will have the autoantibody markers for Type 1 autoimmune diabetes.  From Nillson et al (2007):  “The autoimmune process that leads to the development of Type 1 diabetes probably begins several years before the disease.  The increased insulin resistance during pregnancy leads to an increased demand on the remaining and affected beta cells.  A pregnancy could therefore uncover an early stage of Type 1 diabetes and be interpreted as just GDM.”  Women may develop classical type 1 diabetes during and/or after their pregnancy or may develop latent autoimmune diabetes of adulthood (LADA) some years post-pregnancy.  The correct treatment for Type 1 diabetes/LADA is exogenous insulin as early as possible, to control glucose levels, prevent further destruction of residual beta cells, reduce the possibility of diabetic complications, and prevent death from diabetic ketoacidosis (DKA).  Pregnant women with autoimmune gestational diabetes should be treated with exogenous insulin to avoid maternal and fetal complications, including fetal death. 

Despite 1 in 10 cases of GDM being autoimmune, in the United States and Canada, literature about gestational diabetes mellitus (GDM) typically refers to insulin resistance and the probability that a woman will at some point in her life develop Type 2 diabetes.  The Canadian Diabetes Association states, “Women who have had GDM are at increased risk of developing subsequent type 2 diabetes later in life” and makes no mention of the increased risk of Type 1 diabetes.  However, in Europe, educational materials almost always mention that GDM places a woman at risk for either Type 1 or Type 2 diabetes.  The European medical community has long recognized that some women who have gestational diabetes are subsequently diagnosed with Type 1 diabetes.  As reported in the August 1998 issue of Diabetes Forecast, in a German study 43 percent of women who developed gestational diabetes went on to have full-blown Type 1 diabetes.  They were antibody positive, and they had not been diagnosed with diabetes prior to pregnancy.  The British Diabetes Association, Diabetes UK, states, “About five to ten percent of women with GDM develop Type 1 diabetes sometime in their life. These women have a slowly developing form of Type 1 that is ‘unmasked’ during pregnancy.”  A recent article published by Italian researchers states, “We need to bear in mind that older patients might conceivably develop adult-onset Type 1 diabetes during or after pregnancy.”  In the United States, autoimmune gestational diabetes is generally ignored by the American Diabetes Association, although it is mentioned in The Type 1 Diabetes Sourcebook (ADA/JDRF, 2013; “GDM currently affects ~7% of pregnancies and 5-10% of affected women diagnosed with T2D after delivery (and some are diagnosed with autoimmune T1D, as well).”).  Also, the ADA website states, “In a few women, however, pregnancy uncovers type 1 or type 2 diabetes.  It is hard to tell whether these women have gestational diabetes or have just started showing their diabetes during pregnancy.  These women will need to continue diabetes treatment after pregnancy.”  If you ask women on TuDiabetes.org with Type 1 diabetes, many developed diabetes during pregnancy, and a large number of women on the Facebook LADA Support Group developed Type 1 diabetes/LADA during pregnancy.  Mary Tyler Moore, International Chair of JDRF, was diagnosed with Type 1 diabetes after a miscarriage at age 33.  Why is there this disconnect--why do the U.S. and Canada ignore autoimmune gestational diabetes?  It is important to identify a woman with autoimmune gestational diabetes, to prevent the severe maternal and fetal complications of Type 1 diabetes developing in pregnancy. 

An article in the July 2007 issue of Diabetes Care indicated that autoimmune gestational diabetes (new onset Type 1 diabetes) accounts for about 10 percent of all Caucasian women diagnosed with gestational diabetes.  In a study of Sardinian women (Reproductive Biology and Endocrinology, 2008), 40 percent of women with GDM were antibody positive (GAD, IAA, and/or IA-2) and had autoimmune gestational diabetes.  (Sardinia has the second highest prevalence of Type 1 diabetes in the world, after Finland). 

Sadly, in the U.S. and Canada many women with autoimmune gestational diabetes go for months if not years with wrong diagnoses, struggling to get appropriate treatment for the disease they have (Type 1 diabetes). 

What are signs that you may have autoimmune gestational diabetes?  If you are slim and require insulin during pregnancy to control your GDM, it is likely that you have autoimmune gestational diabetes.  What can you do?  Get autoantibody testing (GAD, ICA, IA-2, IAA, ZnT8), which is relatively low cost and is a definitive test for Type 1 autoimmune diabetes (if a woman has been diagnosed with diabetes and is positive for any one autoantibody, she has Type 1 autoimmune diabetes).  An article in the August 2007 issue of Diabetes Care concludes that, “Autoantibody screening in pregnant women with GDM and follow-up after delivery should be considered for early recognition of Type 1 diabetes.”

References:

The Type 1 Diabetes Sourcebook.  Anne Peters, MD, and Lori Laffel, MD, MPH, Editors.  American Diabetes Association/JDRF, 2013.

Charlotta Nilsson, MD, et al.  Presence of GAD Antibodies During Gestational Diabetes Mellitus Predicts Type 1 Diabetes.  Diabetes Care 30: 1968-1971, 2007.

Barbara Bonsembiante, et al.  Adult-Onset Type 1 Diabetes and Pregnancy:  Three Case Reports.  Hindawi Publishing Corp, Case Reports in Medicine.  Article ID 920861, 2013.

H. Wucher et al.  Poor prognosis of pregnancy in women with autoimmune type 1 diabetes mellitus masquerading as gestational diabetes.  Diabetes & Metabolism, 2010.

A Lapolla, et al.  Diabetes related autoimmunity in gestational diabetes mellitus:  is it important?  Nutr Metab Cardiovasc Dis, November 2009.

Reflections on 20 Years with Type 1 Diabetes

I was diagnosed with Type 1 diabetes in April 1995, when I was 35 years old (yes, do the math, since it’s been 20 years that makes me 55 years old and eligible for the senior discount at my local public swimming pool).  In March 1995, I had been trying to get in to see my doctor, because I knew something was horribly wrong with my health.  My doctor’s office gave me an appointment one month out; however, I was going downhill rapidly, and although I did go to my doctor without an appointment, I was sent to the hospital because my blood glucose was 619 mg/dl and I had all the classic symptoms (polyuria, polydipsia, polyphagia, and extreme weight loss).  In the hospital, I went into diabetic ketoacidosis (DKA).  I cried that entire night in the hospital, devastated by the diagnosis that I thought would ruin my life.  My grieving process and my recovery from DKA took about 10 months.  It wasn’t pretty.  Twenty years later, I know that diabetes sucks, and anyone who tells you otherwise is not a realist.  But I can also tell you that you can live really well in spite of Type 1 diabetes, and that having a life-threatening chronic disease can bring unexpected gifts. 

What I have learned:

Find friends who have Type 1 diabetes:  This is the big one.  They can be online friends, or in-person friends, but it is important to have people in your life who truly understand.  People without Type 1 diabetes can truly support you, but people with Type 1 diabetes really get it.  The first people that I felt inspired by were people I met at the now-defunct International Diabetic Athletes Association (IDAA), which thankfully I found shortly after diagnosis (I am a life-long athlete).  I had found my people!  These were people that were thriving, not without their struggles, but thriving.  Now I have TuDiabetes.org friends and Facebook groups, and also a special JDRF-sponsored Type 1 women’s group that meets near my home.  The JDRF group has meetings, potlucks that are so much fun that one woman declared, “Who knew that diabetes could be so much fun?!”, we attend diabetes conferences together, and we have celebrated the pregnancies and babies of quite a few women!  At a recent TCOYD (Taking Control of Your Diabetes Conference) talk on “Diabetes and Emotions,” my Brazilian friend Fabi was near me, but between us was a man who has lived with Type 1 diabetes for 57 years.  At the end of the talk, Fabi and I rushed to each other for hugs—and the 57-years-T1D man said, “I need a hug, too.”  We had a big group hug, and I said to the man, “Thanks for being an inspiration.”  He smiled and seemed so pleased.  It is a good maxim to treat people, including yourself, with kindness and compassion.  Lend a hand to those in need, and reach out for help when you need it.  Type 1 diabetes is an isolating disease, but you will not feel alone if you find your people.

Be the tortoise, not the hare; slow and steady wins the race:  This is not a sprint, it is an ultramarathon.  The daily grind of Type 1 diabetes, all the things we have to do to stay healthy, is considerable.  Stay motivated, stay focused, and when your motivation flags, ask your friends who have Type 1 diabetes to help you.

You don’t have to give up everything:  Dark chocolate, macadamia nuts, and wine are all low carb or no carb.  Chocolate-covered macadamia nuts and a glass of wine, anyone?  Another thing—my mother always advocated moderation—she lived to a healthy, vibrant 93 years old and knew a thing or two.

Do your best with blood sugar control, take the best care of yourself possible, and live your life:  Much of my diabetes care is done on autopilot—not without awareness, but without obsession and stress.  It isn’t always that way, but my life is better when not consumed with diabetes angst.

Technological advances make lives hugely better:  I was in my endo’s office the day that Humalog, the first fast-acting analog insulin, was released.  After R (regular insulin) and NPH, Humalog was a miracle, and dramatically reduced hypos in me.  I have used an insulin pump for 17 years.  Although the insulin pump is amazing and I would never choose to go back to MDI (multiple daily injections), the Dexcom continuous glucose monitor (CGM) is even better.  I can exercise, I can do a 3-hour yoga class, I can go to a movie with almost no worries with my trusty Dex attached to me.  Bionic pancreas here I come!  [Note, I recognize that many do not have access to these items.  But don’t be afraid to be your own advocate and ask for the best tools available….the squeaky wheel gets the grease, or the best tech as the case may be.]

One size does not fit all:  The only sure thing about Type 1 diabetes is that we all need exogenous insulin (oh, except for some people in their honeymoon period).  When you give advice, say, “This worked for me, it might work for you, but then again it might not.”  We are all unique individuals, and diabetes affects each person differently.

Exercise, yoga, and meditation are magic “pills” for me:  Find something that works for you, that calms your mind, that helps you be “awake.”  I love to hike, I love all things fitness, and I have avidly practiced yoga for 21+ years.  I always say, yoga is easy, meditation is hard, but still I meditate.  Find your magic pill.

Doctors are not always right:  I was initially misdiagnosed as having Type 2 diabetes, by the endocrinologist at the hospital, because I was 35 years old.  But if the doctor had made the diagnosis based on etiology and phenotype, I would have been correctly diagnosed and not had to suffer being taken off of insulin.  The CDE (Certified Diabetes Educator) and nutritionist at the Diabetes Center where I was sent for classes realized I was not a Type 2, but they would not contradict the endocrinologist.  But I would and I did, and I was correctly diagnosed within a week (but that was one week off of insulin just after DKA).  I repeat, doctors are not always right.  On the other hand, today I am so fortunate to have an amazing endocrinologist and GP, who work with me and help me and support me.  No blame, no shame, just a helping hand on the journey.  Just know, you need to be your own best advocate within the medical system.

Finally, test, test, test!  Test your blood glucose often.  Know your numbers (BG, A1c, blood pressure) and do your eye, kidney, and nerve tests.  See your doctor regularly.

In Type 1 diabetes, I actually found my mission in life, which is to change the perception that Type 1 diabetes is a childhood disease, and to work towards getting the many, many people with adult-onset Type 1 diabetes correctly diagnosed and treated (most are still misdiagnosed).  Out of the worst, the thing that I thought would ruin my life, came my purpose in life.  I wish I had not acquired this disease, I don’t wish this disease on anyone, but my life was not ruined and I am living well and with purpose (mind you, not without the occasional diabetes day from hell).  Before 1921 and the discovery of insulin, people with Type 1 diabetes died rapidly.  We are given a second chance—let’s use it well.

Gems from "The Type 1 Diabetes Sourcebook"

Leave it to Anne Peters MD to be co-editor of this amazing resource for medical providers who treat patients with Type 1 diabetes (Type 1 Diabetes Sourcebook, 2013. Anne Peters, MD, and Lori Laffel, MD, MPH, Editors. JDRF and American Diabetes Association). The book is written for the Type 1 medical community, but I think it has a lot of good information for the patient with Type 1 diabetes. Unlike so many books on Type 1 diabetes that only focus on kids, this one addresses both children AND adults with Type 1 diabetes, and notes that adults represent 85% of the Type 1 population. I also appreciate the level of compassion shown in the book towards those with T1D—in particular, I am so unused to compassion expressed towards people with adult-onset Type 1 diabetes, but this excellent book has it in abundance. Here are direct-quote gems that I found in The Type 1 Diabetes Sourcebook (keeping in mind that my usual focus is adult-onset Type 1 diabetes):

• There is no authoritative source for the incidence of T1D in adults in the U.S. population. However, it is important to note that T1D is not a childhood disease and may be diagnosed into adulthood with an additional peak in the sixth and seventh decades of life [emphasis mine]. Page 1.
• Recent data are needed regarding the incidence of T1D in adults. Notably, nearly 85% of people living with Type 1 diabetes are adults. Page 8.
• Adults developing T1D may follow a less precipitous course with few or no symptoms and an elevated glucose level identified incidentally on routine blood work. These individuals may be treated (unsuccessfully) with oral agents before it is determined that they are actually patients with evolving T1D who need treatment with insulin [emphasis mine]. Page 3.
• Initial Treatment for Adults: Adult patients can vary greatly at presentation, from a more acute picture, with DKA and marked hyperglycemia, to a more gradual course such as is often seen in LADA. For those presenting acutely as well as those presenting more indolently, starting insulin is the mainstay of therapy [emphasis mine]. Page 79.
• We want [medical] providers to know that patients with T1D are not the same as patients with T2D; thus, we describe the specific approaches for patents with T1D across the life span. Page 73.
• The pathophysiology of the two diseases [T1D and T2D] differ on a basic pathophysiologic level such that T1D is marked by insulinopenia while T2D is characterized by obesity, hyperinsulinemia, insulin resistance, and relative insulinopenia. Page 104.
• Regarding diagnostic criteria (ADA, WHO): As the ADA/WHO diagnostic criteria are heavily influenced by the overwhelming burden of T2D worldwide, clinicians must recall that these criteria are not T1D specific and do not always provide optimal sensitivity for the diagnosis of T1D. ADA and WHO criteria are used to broadly diagnose diabetes, however, a combination of immunologic, genetic, and phenotypic features must be used to differentiate among the different forms of diabetes. Page 4 and 5.
• We consider all patients with evidence of autoimmunity to have T1D. Page 5.
• Given the tremendous burden T2D places on the U.S. health care system, it is not surprising that patients, health care providers, and researchers often use the nonspecific term diabetes when referring to T2D. However, the practice of referring to T2D as simply diabetes cultivates numerous dangerous misconceptions regarding the etiology, pathophysiology, and treatment of other subtypes of diabetes [emphasis mine]. Page 6.
• Despite the historical focus on children when discussing the epidemiology of T1D, it is critical to consider that adults make up 25-50% of newly diagnosed patients and represent the overwhelming majority of patients living with T1D. Importantly, adults with LADA may represent an additional 10% of those adults incorrectly diagnosed with T2D. As these patients are far more likely to progress rapidly to requiring insulin therapy, clinicians treating adults must be aware of the need to screen for LADA, particularly in their patients with relatively low BMI. [Elsewhere in the book, on page 24, the authors state that 60% of new-onset T1D is seen in adults, and that is confirmed by the most recently available data from the CDC.]
• [In persons with LADA], failure to control glucose [with non-insulin therapies for T2D] should rapidly lead to insulin therapy rather than allowing months to years of experimenting with non-insulin approaches [emphasis mine]. Page 24.
• It is often unappreciated that many individuals with T1D will have significant amounts of C-peptide, representing residual beta cell function. The standard teaching that T1D is defined as complete absence of beta cells is inaccurate and is a disservice to both patients and providers. Among 411 participants in the Joslin Medalists study (those with T1D greater than or equal to 50 years), 67.4% still had detectable C-peptide. Pages 26 and 27.
• For those with early T1D, expert opinion (i.e., not data driven) recommends either low doses of basal insulin to prevent DKA or prandial insulin to prevent postprandial hyperglycemia. Page 27.
• Preservation trials focus on halting further pancreatic beta cell destruction after T1D diagnosis. At the time of diagnosis, it has been estimated that 15-40% of beta cell function remains. This remnant can serve one well while it lasts, as evidenced by better overall glycemic control during this remission or honeymoon phase, with lower A1Cs, less glycemic variability, and less hypoglycemia risk. Page 42.

Originally published at Tudiabetes.org