In 2000, my first paper on adult-onset Type 1 diabetes was
published in the newsletter of the International Diabetic Athlete Association
(IDAA), a now-defunct organization. I
feared that I would receive hate mail for what I wrote, particularly for
blasting ADA and JDRF, but instead I received so many email responses to the
effect of, “thank you, finally someone has written the truth about Type 1 diabetes.” When I read my words of 17 years ago, I
realize we still have a long way to go, but in fact much progress has been made
(for example, JDRF has a program and brochure for people with adult-onset Type
1 diabetes). Here is my article from 2000, with a few 2017 updates as noted:
ONSET OF TYPE 1
DIABETES IN ADULTS:
THE NEED FOR
CORRECT DIAGNOSIS AND TREATMENT
Type 1 or autoimmune diabetes has long been thought of as
a disease of childhood; in fact, its previous designation was juvenile
diabetes. Only in recent years, with the
advent of antibody testing, have some in the medical community recognized that
Type 1 diabetes affects people of all ages, and in fact the majority of people
who are newly diagnosed with Type 1 diabetes are adults. In 1997, the Expert Committee on the
Diagnosis and Classification of Diabetes Mellitus stated that, “immune mediated
diabetes commonly occurs in childhood and adolescence, but it can occur at any
age, even in the eighth and ninth decades of life” (The Expert Committee on the
Diagnosis and Classification of Diabetes Mellitus, 1998). However, the medical community has been slow
to recognize this, and Type 1 diabetics diagnosed as adults are still treated
as abnormalities and frequently given inappropriate treatment for the disease they
have. All too often, they are diagnosed
with Type 2 diabetes, which is a fundamentally different disease not only
clinically but genetically (Saudek, Rubin, and Shump, 1997), and the methods of
treatment for the two diseases are also different. The misdiagnosis typically results in
under-treatment, and causes needless suffering.
Many International Diabetic Athletes Association (IDAA) members were
diagnosed with Type 1 diabetes as adults, including Linda McClure, the IDAA
Executive Director, who was diagnosed at age 36. I was diagnosed with Type 1 diabetes at age
35, although I was briefly treated as if I had Type 2 diabetes and was sent to
Type 2 diabetes education classes. I
discovered that the diabetes care community is not set up to deal with adults
who are newly diagnosed with Type 1 diabetes, which is a situation that I
believe needs to change.
It is well-known that the symptoms of Type 1 diabetes
develop slightly more slowly in adults than in children. I have a book that was published in 1958 that
describes the progression of the symptoms of Type 1 diabetes in adults versus
children (Dolger and Seeman, 1958). In
adults, the disease appears more gradually than childhood-onset Type 1, but its
cause is the same (Karl and Riddle, 2000).
Unfortunately, because an adult with Type 1 diabetes typically has some
functioning beta cells for some time after diagnosis, oral medications for Type
2 diabetes may to some degree control glucose levels right after
diagnosis. However, 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, and reduce the possibility of diabetic complications (Karl
and Riddle, 2000). A study of the
Diabetes Control and Complications Trial (DCCT) demonstrated that initiating
intensive insulin therapy (defined as three or more injections per day or
continuous subcutaneous infusion of insulin, guided by four or more glucose
tests per day) as soon as possible after Type 1 diabetes is diagnosed helps
sustain endogenous insulin secretion, which in turn is associated with better
metabolic control and lower risk for hypoglycemia and chronic
complications (The Diabetes Control and Complications Trial Research Group,
1998).
The United States
Centers for Disease Control and Prevention (CDC) states that the number of new
cases of diabetes diagnosed per year is 798,000, and that Type 1 diabetes may
account for 5% to 10% of all diagnosed cases of diabetes (from the CDC web
site). In fact, these percentages only
include those who have been correctly diagnosed, and many recent studies
indicate that that Type 1 diabetes is undercounted. All too often, those with Type 1 such as
myself who acquire the disease as adults are misdiagnosed as having Type
2. Numerous studies, particularly recent
ones that used antibody testing (islet cell antibody [ICA], anti-glutamic
acid decarboxylase [anti-GAD] antibodies,
etc.), indicate that approximately 10% of adults newly diagnosed with Type 2
diabetes in fact have the autoimmune markers for Type 1 diabetes and have been
misdiagnosed (Wroblewski, et.al., 1998).
In the landmark United Kingdom Prospective Diabetes Study (UKPDS) of
Type 2 diabetes, 10% of the people that supposedly had Type 2 had ICA and/or
anti-GAD antibodies, and clearly had Type 1 diabetes (Zimmet et. al.,
1999). The Endocrine Society estimates
that as many as 20% of the people diagnosed with Type 2 diabetes actually have
Type 1 diabetes (Endocrine Society web site).
The web site for the Lehigh University Diabetes Frequently Asked
Questions (FAQs) states that, “Latent autoimmune diabetes in adults (LADA, or
Type 1 diabetes in adults) may constitute as much as 50% of non-obese
adult-onset diabetes.”
It is important
that the type of diabetes a patient has is correctly assessed. As stated previously, adults who acquire Type
1 diabetes should be put on exogenous insulin as early as possible, to control
glucose levels, prevent further destruction of residual beta cells, and reduce
the possibility of diabetic complications.
However, these are very clinical outcomes that fail to address the
“human side” of misdiagnosis. Those of
us who have Type 1 diabetes but were initially diagnosed with Type 2 diabetes
often suffered needlessly while on oral medications for Type 2 diabetes until
we received appropriate treatment for the disease that we have (exogenous
insulin). The examples below describe
the human impact of misdiagnosis.
June Biermann, prolific author of books on
diabetes including The Diabetic’s Sports and Exercise Book, was
diagnosed with Type 2 diabetes in 1967 at age 45, even though she failed to
meet the criteria associated with Type 2 diabetes. June was prescribed various oral medications
for Type 2 diabetes, which did not adequately control her blood sugars, and
after one year of much suffering and further weight loss (and several doctors),
June was treated with exogenous insulin.
The standard for that time was one injection per day of NPH insulin. Although for many years June referred to
herself as a Type 1-1/2 diabetic, today she probably would be called a
late-onset Type 1 diabetic. Thirty years
after her initial diagnosis as a Type 2 diabetic, June was given a C-peptide
test, which indicated that her body did not produce any insulin. June says, “The medical profession wanted to
believe that I did not exist and that the problem was with me, when in fact it
was the medical profession that ignored Type 1 diabetes in adults” and that she
“has always felt misunderstood and ignored, and that [she] was a freak to the
medical profession.” June now does
five or more injections per day of Humalog and NPH purified pork insulin, tests
her blood sugar 7 to 8 times per day, and is looking forward to the introduction
of glargine, the long-acting insulin analog without a peak.
Matt Hammer, an athlete who enjoys running and
yoga, was diagnosed with diabetes in April 1997 at the age of 29. Because of extreme fatigue and constant
urination, Matt went to the Kaiser Permanente Acute Care
Clinic near his home in Oakland, California.
His blood sugar was in the 400s (mg/dl).
The attending physician told Matt, “You have diabetes, avoid sugar, and
someone will be calling you soon.” He
was given no other information and was sent home. Matt was treated as if he had Type 2
diabetes, even though he had none of the risk factors, and he was both put on
various oral medications and instructed to control his blood sugar with just
diet and exercise. For 21 months, Matt’s
doctors tried to get his blood sugar under control with oral medications, diet,
and exercise, but Matt’s condition continued to deteriorate. In February 1999, while in Hawaii on a yoga
retreat, I met Matt. At lunch one day,
he saw me injecting my insulin, and commented that he too had diabetes, but
that he was on oral medications. Because
I saw that he was young, thin, and fit, and having experienced being
incorrectly diagnosed myself, I asked Matt the next day if he had ever
considered that he might have Type 1 diabetes and that he probably needed to be
on insulin injections. Matt said, “A
light bulb went off in my head”, and as soon as Matt returned from Hawaii he
went to Kaiser and insisted that he be put on exogenous insulin. Matt now uses Humalog insulin in an insulin
pump. When Matt was finally correctly
diagnosed he was, “angry that he received such bad care”, yet he had “a sense
of relief that he could now get proper care after things had been out of control
for so long.” Matt feels that his misdiagnosis
resulted in a lot of needless pain.
Today, he says that the hardest thing about diabetes is the need for
constant daily discipline, but that although it is a really tough chronic
disease, it is possible to live a good life if you can be disciplined. Matt has an uncle who was diagnosed with
diabetes as an adult 30 years ago, and his uncle has had both of his lower legs
amputated as a result of his diabetes.
Matt’s uncle is on insulin injections, but Matt does not know what type
of diabetes his uncle has.
Why
is there a tendency to misdiagnose adults who have Type 1 as Type 2
diabetics? I believe that there are
several factors, the primary one being the emphasis by the diabetes medical
community that Type 1 diabetes is a childhood disease. I also think that doctors want to keep people
off of insulin injections as long as possible, not realizing that for Type 1
diabetics there are significant short- and long-term benefits to beginning
exogenous insulin as soon as possible.
The two principal organizations that address diabetes in the United
States are the American Diabetes Association (ADA) and the Juvenile Diabetes
Research Foundation (JDRF). A common
theme in materials published by both organizations is using diabetic children
to garner more sympathy, and therefore more funding; thus, adults with Type 1
tend to be ignored because they do not garner as much sympathy. The ADA’s emphasis is on Type 2 diabetes, and
ADA recently published a position paper on Type 2 diabetes in children, even
though Type 2 diabetes affects a significantly smaller number of children than
the number of adults who acquire Type 1 diabetes. Although I have asked ADA repeatedly why they
have not written a corresponding position paper on adults who acquire Type 1,
ADA has not responded to my question.
JDRF was founded by parents of children with diabetes. JDRF appears to use children, again for
sympathy, but also to distance themselves from Type 2 diabetes, which is perceived to be a lifestyle-related,
preventable disease that typically occurs in older adults (2017 note: Type 2 diabetes is a complex disease with
many myths of its own). JDRF’s
publications and press releases emphasize that “our priority is juvenile, Type
1, diabetes, which primarily strikes children" (Ross Cooley, Chairman of
the JDRF Board of Directors, November 2000).
Even JDRF's own figures say that, of the 30,000 new cases of Type 1
diagnosed each year, “over 13,000 of whom are children” (from the JDRF web
site); thus JDRF’s own figures indicate that the majority of people diagnosed
with Type 1 each year are adults.
However, those figures exclude the many adults who have late-onset Type
1 and are misdiagnosed as Type 2.
Clearly it would be helpful if both ADA and
JDRF acknowledged the full incidence of Type 1 diabetes in people of all ages.
If you
are newly diagnosed, and unsure if you have Type 1 or Type 2 diabetes, you can
be tested for anti-GAD antibodies (2017 note:
autoantibodies include GAD, ICA, IA-2, IAA, and ZnT8). If an anti-GAD antibody test is performed
when diabetes is first diagnosed, a positive result means you have Type 1
diabetes. Also, the C-peptide test,
which is a measurement of the body’s natural production of insulin, can be a
way to gauge whether you have Type 1 or Type 2 diabetes (Connors, 2000).
All
people deserve appropriate medical care for the disease that they have. It is imperative that the true incidence of
Type 1 diabetes in adults be known, and that the diabetes medical community
recognizes us, so that we who acquire the disease as adults can live the best
lives possible.
REFERENCES
Connors,
Thomas, 2000. “An Old Test Teaches
Doctors New Tricks: C-Peptide Exam
Becoming an Accepted Tool for Diabetes Treatment.” Diabetes Interview, September.
The Diabetes
Control and Complications Trial Research Group, 1998. “Effect of intensive therapy on residual
beta-cell function in patients with Type 1 diabetes in the Diabetes Control and
Complications Trial. A randomized,
controlled trial.” Annals of Internal
Medicine, April 1, 1998.
128(7):517-23.
Dolger, H., and
B. Seeman, 1958. How To Live With
Diabetes. W.W. Norton and Company,
New York.
The Expert
Committee on the Diagnosis and Classification of Diabetes Mellitus, 1998. “Report of the Expert Committee on the
Diagnosis and Classification of Diabetes Mellitus.” Diabetes Care, Volume 21, Supplement
1.
Karl, D.M, and
M.C. Riddle, 2000. “Not Just For
Kids.” Diabetes Forecast,
November.
Lehigh University
Diabetic Mailing List, Frequently Asked Questions, “What is Latent Autoimmune
Diabetes in Adults?” June 27, 1996.
Saudek, C.D.,
R.R. Rubin, and C.S. Shump, 1997. The
Johns Hopkins Guide to Diabetes For Today and Tomorrow. The Johns Hopkins University Press,
Baltimore.
Wroblewski, M.,
et al., 1998. “Gender, Autoantibodies,
and Obesity in Newly Diagnosed Diabetic Patients Aged 40-75 Years.” Diabetes Care, Volume 21, Number 2.
Zimmet, P., et al.,
1999. “Crucial Points at Diagnosis. Type 2 Diabetes or Slow Type 1
Diabetes.” Diabetes Care,
Supplement 2: B59-64.
