Misdiagnosis is shockingly common among patients with diabetes. One study, for example, revealed that about 25% of new patients with type 1 diabetes had previously been misdiagnosed with some other ailment, typically either type 2 diabetes (in adults) or bacterial and viral infections (in children). And some patients diagnosed with type 1 diabetes may actually have a different form of diabetes.
When patients are incorrectly treated, if they’re treated at all, it leads not just to frustrations but to danger, increasing the risk of short- and long-term complications, often including diabetic ketoacidosis (DKA).
The Diabetes Daily community is no different! When I asked our readers and forum members to hear their misdiagnosis experiences, the response was alarming. So many people (or the loved ones that they care for) were told the wrong things when they first reached out for help.
I thought we would highlight some of these stories to raise awareness of this issue and to stress the importance of being your own, or your loved one’s, best advocate.
Almost 40% of adults that develop type 1 diabetes are initially misdiagnosed:
“I was diagnosed twice with dehydration and was told I was too thin and athletic to have diabetes. I WebMD’d myself and self-diagnosed myself with type 1 and went back to the same doctor, and demanded that he test me for type 1. The doctor was shocked when my A1C was 17.5 and I had all the markers for type 1. Yet another example that the only person that will be your advocate is YOU! I learned to speak up from the get-go!” – Jenny S.
“I was misdiagnosed and told I had gestational diabetes, but then it didn’t go away. My primary doctor said it was type 2, others said type 1. After being tired of my doctors (endos included) arguing over whether I was type 1 or type 2, I asked for a referral to a Joslin satellite location. They said I was absolutely type 1. I am pretty sure I was type 1 as a teenager — all of the signs were there — I just got lucky because I was wicked active and ran competitively, so it took 10 years after my first diagnosis and a simple blood test. Since then I’ve worked to live as healthy as I can and hopefully not have significant fallout due to years bring mis/un-diagnosed.” – Lori I.
“My general practitioner misdiagnosed me as type 2, although I lost 4 stones in 2 months and my blood sugars were in the 30’s [mmol/L]. My doctor said I should stop eating cakes, pies, and biscuits. He didn’t believe me or do anything when I told him I was eating a carb-free diet.” – Andy P.
“My A1C was high (over 12%) so the Army doctor put me on metformin. He ran a c-peptide test and “ruled out” LADA. Years later, I was eating healthy and working out but numbers weren’t going down drastically. I worked with a diabetes nurse and she tested for antibodies and sure enough, they were present. My original doctor wanted to just increase my metformin, so I sent my labs to an endocrinologist at the University of Miami. He said I needed to be on insulin ASAP.” – Joseph A.
“I had an ankle injury from dancing that wouldn’t heal. I started losing weight like crazy.
“I was a dancer, so all of my friends, family & doctors thought I was anorexic or bulimic.
“My pediatrician instructed my mom to feed me whatever I wanted, whenever. To eat McDonald’s all day if I wanted. To stay away from diet soda. To get milkshakes instead of water. Eat a lot of peanut butter. Anything to get ‘meat on my bones.’ But I was tired all the time and wasn’t me! This went on for months, until finally at my yearly physical they did a CBC test which hadn’t been done thus far. I got a call and was immediately directed to the hospital with a blood sugar of 500 [mg/dL].” – Geri C.
“I was diagnosed with type 1 diabetes in April 1995. I was hospitalized (blood sugar = 619 mg/dl) and briefly went into diabetic ketoacidosis (DKA) in the hospital. But because I was 35 years old, I was diagnosed by the hospital’s endocrinologist as having type 2 diabetes, despite having zero risk factors, and I was taken off of IV insulin and discharged from the hospital. I was given a prescription for glyburide, a sulfonylurea, which did nothing for me. I was sent to classes for type 2 diabetes at the local diabetes center.
Because I am a scientist, I studied the information provided to me about diabetes and realized that phenotypically I fit the textbook description of type 1 diabetes. One week after I was hospitalized I confronted my endocrinologist regarding the ‘type 2 diabetes’ diagnosis. To his credit, the endo admitted he made a mistake; I was put on exogenous insulin, and given the diagnosis of type 1 diabetes.” – Melitta R.
“I was misdiagnosed with gestational diabetes during my first pregnancy at age 34. I had both an obstetrician and a direct-entry midwife because I was planning a homebirth but still wanted to do some of the standard screenings. Incidentally, the midwife caught my high sugars early on in the pregnancy (around week 15) and my obstetrician dismissed them until the official gestational diabetes screening. Which I failed. I was able to control blood sugar with a very restricted diet. In retrospect, I was likely at the very beginning of developing type 1 diabetes. A few months after my child was born, I followed up with my primary care doc. My A1C was in the low 6s, but she told me to keep running and that I’d be fine. My sleep-deprived motherhood state rendered me incapable of recognizing that this was not good advice. All of this happened in a very rural community with mediocre healthcare.
“Shortly after, we moved to Washington state. I became pregnant with my second child at age 37 and was screened early for diabetes. My A1C was a shocking 10.4%! I was immediately transferred to a maternal diabetes specialist clinic at UW. With basal insulin, metformin, and a tightly controlled diet, I quickly got the A1C to the upper 5s. By the end of the pregnancy, I was also using some bolus insulin. The pregnancy and birth were great. After childbirth, the nurses in the hospital wouldn’t let me take insulin because “your diabetes will go away now that you’ve given birth” despite lots of objections from me. Many health practitioners I saw in those first 6 months reiterated the fact that I was “too thin” to have anything other than gestational diabetes and that if I ate well and was patient, all would be fine.
“It was a miserable 6 months of trying to manage blood sugars with an extraordinarily limited diet and (later) only basal insulin. I finally found both an endocrinologist (in short supply in this region) and a therapist (who has type 1 diabetes) to help me navigate and advocate for myself. At that point, my c-peptide and other levels were checked and I was diagnosed with adult-onset type 1 diabetes and given both basal and bolus insulin.” – Kate D.
“In 1971, I was diagnosed by a gynecologist because my mom took me because I was spotting between periods. Several months earlier she had taken me to our family doctor because I was feeling horrible, tired, absolutely no energy. He actually rolled his eyes at her and said it was ‘growing pains.’ She was humiliated, she knew something was wrong! She was so relieved when I started spotting so she could take me to a gynecologist! He could smell the sweetness on my breath and he tested my urine, then immediately sent me to the internist who officially diagnosed me. I had the other classic symptoms—losing 15 pounds in 2 weeks, peeing a lot and being excessively hungry. The internist sent me home and told my mom to bring me to the hospital the next morning. She cried when the doctor told her. Me, I was so relieved that there was a name for what I had and that I wasn’t a crazy hypochondriac like my friends thought! I was 16.” – Aimee P.
“I was misdiagnosed and sent home with a pill for type 2. I used another patient’s blood glucose meter and my blood sugar read ‘HI’ so I called the doctor back. They told me that she was on vacation and could see me in 2 weeks. My wife found an endo that seemed concerned enough to see me immediately. I was given the correct diagnosis and insulin, with a blood sugar of 900+ mg/dL.” – Jim M.
LADA and MODY diabetes are less common and even harder to diagnosis
“I was originally misdiagnosed as type 2. Finally, 6 years later, I was correctly diagnosed with LADA.” -Michelle B.
“I was first diagnosed as depressed, but the antidepressant had no impact on me. However, after a blood test showed elevated blood sugars, I was told I had type 2. I had unexplained weight gain, lethargy, horrible brain fog. I didn’t know anything about diabetes but after doing some research I didn’t think it could be type 2, so I pushed for more tests. It took a couple of months in the end but when I was finally correctly diagnosed with LADA. I asked my doctor what I had to do and he told me not to eat potato chips and sent me home. I got a new doctor.” – Cat. H
“My vision went from long to short-sighted, resulting in me getting my eyes checked with the optometrist suggesting I speak with my general practitioner regarding a blood glucose test. The fasted blood test came back with a reading of 21.6 mmol/L (388 mg/dL), to which the doctor said ‘you’ve got diabetes,’ put me on metformin, and ‘I’ll see you in 3 months.’
As a fit and otherwise healthy 40 year old, I was in shock and didn’t question it. Luckily my wife is not as easily convinced and contacted her endocrinologist who supported her gestational diabetes. She explained the situation and the endocrinologist asked to see me that afternoon and confirmed I was LADA (of course tested to confirm) and in the interim put me on insulin. All my subsequent blood tests confirmed it. I’m lucky she acted, because without insulin I could have ended up in hospital within weeks. Definitely pays to question things.” – James C.
“I was diagnosed at 56 years old, only after I was a real pain, arguing heatedly with my endocrinologist that I was a type 1 with LADA. I brought my genetic test for celiac and an article supporting that relationship. He ordered the tests even though we were shouting at each other. I told him that I was going low-carb because I didn’t believe him. Two weeks later, the GAD65 antibodies were at four times the amount to be diagnostic, plus a c-peptide that was going south. He is my greatest champion years later.” – Sheila M.
Some people were sent home and told they had common ailments and viruses
“I was told I had a stomach bug. I said no, I didn’t. I also said I should weigh more than I did. They said dehydration causes weight loss. They gave me an IV and sent me home. I was back at the doc a few days later. Saw a different doctor and listed off every weird symptom I could think of beyond vomiting (like a weird bad taste in my mouth, yeast infections, weakness) and after 2 hours, they figured out it was diabetes. I had been in DKA for over a week.” – Amy P.
“My daughter was misdiagnosed as a toddler. They first put it down as teething and a summer bug!” – Anna G.
“I was 8 years old and I would vomit curdled milk after eating cereal. I would lay my head on the bench seat of the car in front of the air conditioner vent almost panting. Finally, doctors listened to my mom and I had a 6-hour glucose tolerance test. The hospital said it was normal.
“I had a second 6-hour glucose tolerance test at same hospital and they said it was normal.
“I was 8 years old and weighed 35 pounds. I was severely dehydrated. The inside of my mouth was like cotton. A friend’s mom saw me and made my parents take me to the hospital (ironically, the same one with the glucose tolerance test). I was admitted for severe dehydration. My blood sugar was over 1000 mg/dL. They gave me insulin in my IV for a week before they told my parents I had diabetes.” – Wendy S.
“My daughter was 18 months old and was correctly diagnosed with an ear infection, but all other symptoms were dismissed as related to the infection (Kussmaul breathing, vomiting, and resultant dehydration/thirst). Later that night I knew something more was brewing, so I tested her blood sugar and she was over 350 mg/dL even though she hadn’t kept any food down for two days.” – Rachel F.
“My daughter, Ava, was always hyperactive starting at pre-k. I noticed that it was food-related. I told her doctor and she told me to feed her more food because she was underweight. This went on for years. Around 4th grade, the school got involved and Ava was diagnosed with ADHD and autism. As far as her weight goes, they continued to tell me to feed her more aggressively and maybe with a milkshake before bed.
By the 2nd semester of 6th grade, she quit moving and just sat in one place and her hair started to fall out. She only weighed 58 pounds. I took her back to the doctor and this time I had pictures on my phone of empty food packages and empty water bottles. I had to tell the doctor how many calories she ate and how much water she drank. I showed the doctor evidence that she was eating more than 6,000 calories a day and drinking more than 9 pounds of water. I told her doctor I would not leave without a urine and blood test.
After 5 mins of urine test, the doctor came in all shaky and told us to go to ER. Ava never had any outward signs of DKA. She never threw up never felt anything other than strange. Because she is on the autistic spectrum, it makes it difficult to diagnose. I want everyone to understand how dangerous this can be. The hospital never gave us initial labs. I’ll never know how high she was but it must have been bad.” – Anna M.
“Lucia was initially misdiagnosed with Lyme disease at 3 yo. The presumed Lymes infection occurred after she had a tick bite around the same time that symptoms were really noticeable (though they had been ongoing for a while). It was routine labs to follow up on the continuance of symptoms (after a round of antibiotics didn’t help) that caught the high blood glucose (300-400’s mg/dL). To her credit, the PCP acted quickly after it was caught and didn’t wait to seek treatment for Lucia.
“Though the initial misdiagnosis was frustrating, the tick bite was the impetus for seeking out medical intervention. I might have just ‘waited out’ the lethargy, increased thirst, renewed bed wetting, etc, while unbeknownst, her blood sugar was steadily climbing higher. We avoided DKA because of how/when the T1D was caught.” – Tracey S.
“We were told my son had a stomach bug. We returned later that day with my son in DKA.” – Terry P.
“I was told I had a lung condition and they suspected tuberculosis. At the time, my son was age 13 and diagnosed at the Children’s Hospital after collapsing. My doctor didn’t even do a urine or blood glucose test despite my concerns that my son’s symptoms mimicked mine!” – Jan F.
“My son was peeing all the time with super crazy mood swings around food. I tested his blood sugar frequently and it was over 200 mg/dL. I took him to the pediatrician and they tested his urine, which was negative for glucose. They refused to do an A1C and insisted he did not have diabetes. I made them give me an endocrinologist appointment, he wouldn’t see us until we did an A1C test. It was in the diabetic range and he was diagnosed. Fast forward after more labs, no antibodies, I was told we’ll never know the cause of his diabetes. I found two research studies and got myself, him, and my other son diagnosed. True medical system failure. I did it all.” – Ali H.
Knowing the signs of diabetes and trusting your gut can go a long way in receiving a proper diagnosis. Hopefully, these stories can help others self-advocate and get a proper diagnosis and treatment as soon as possible.
Read more about A1c, diabetes diagnosis, insulin, Intensive management, joslin, low-carb diet, metformin (Glucophage), misdiagnosis, newly diagnosed, type 1 diabetes, type 2 diabetes.