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Were you misdiagnosed with another condition before you were diagnosed with T1D?
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T2D
My blood sugar was found to be high at my annual check up and I was diagnosed with type 2 diabetes. It was hard to make my GP believe that I was taking the prescriptions as there was no change in my BG.
About two months later the diagnosis was changed and I was taught insulin delivery in a short hospital stay. I had none of the other symptoms.
A routine blood test showed high A1C; internist declared I was type 2 and put me on metformin, which made me sick. My brother had type 1, so I grew up in a diabetic household and was more knowledgeable than my internist’s average patient.. Even though he told me it was not necessary to see an endocrinologist, I went out and found one. That doctor sensed I was type 1 even before we got back blood C-peptide and GAD antibodies results from lab.
Pretty much exactly the same story, except metformin didn’t make me sick.
They did diagnose me with gestational diabetes at first. However, diet did not help and went on insulin soon after.
I was told I had tonsilitis and sent home with penicillin. Needless to say, after drinking plenty of vitamin C to “get better,” I was back 2 days later in much worse condition. Ended up in the hospital for a week. I am American, but this was in the UK while I was studying as a grad student.
I was diagnosed with measles, mumps and chickenpox in 1941-1945. I was diagnosed with diabetes in Sept, 1945.
Richard!
You’ve always been on the cutting-edge of diabetes treatment! So glad you’re here!
I was 38 when I was diagnosed 30 years ago, so initially as type 2 and put on a sulfonylurea which of course did nothing as my pancreas had no more to give. This was despite having lost significant weight and having crazy high glucose and A1c.
About 3 months before my diagnosis, I complained to my doctor about low energy and fatigue. He told me that I wasn’t 21 any more and I should stop expecting to be able to work so hard. I guess my diagnosis was “old age”? (I was 32.)
Well, yeesh! That’s… how could a doctor think, at 32, that you were just getting old? I don’t understand this, but I’m also not a doctor. The symptom is something that a lot of disease processes share, but I’d still think he’d want to ask questions and explore a little more.
My small town doctor diagnosed me with T2D even though I was 17, very thin, and had no family history of either T1 or T2 diabetes. My mother’s friend had a young son with T1D and recommended that we go see their endocrinologist in Denver. I was diagnosed with T1D and started on insulin the day of my appointment with him! He’s the only doctor I’ve trusted with my diabetes care since then.
I had chicken pox when in first or second grade, had Shingles twice the year before my T1D diagnosis, first time in late 1990, second time in Spring 1991.
From my second round of Shingles to my T1D diagnosis I was almost constantly sick and lost count of all the Doctor appointments I had, each time probably misdiagnosed with a bacterial or viral infection with no BG testing or anything else to test for any form of Diabetes.
Roughly 3 days before my T1D was diagnosed I again went to the Doctor who gave me some antibiotics insisting that I only had some bacterial infection that the antibiotics would resolve.
But then less than a week later I ended up getting taken to the Clinic about two hours before they closed and stayed at the Clinic until almost 3 hours after they closed with them running blood tests and things before the doctor gave my mom the option of “Will you drive him to the Hospital ER, or should I call an ambulance to transport him from here to the Hospital ER?”
When the Hospital had me step on the scale and then looked at my records, they said that I had dropped from 160 lbs. down to 112 lbs. in less than 3 weeks. Then when they tried testing my Blood Glucose, they said their lab equipment could read BG levels up to 1600 and they had never tested anybody that their lab couldn’t get an accurate BG reading on, but when they tested my BG level in the lab, they said they could only guess by how long it took to get my BG down low enough for their lab to get a numeric reading instead of the word “HI” the Doctors said their guess of my BG level at T1D diagnosis was probably at least 2100 and possibly higher than that.
By diagnosis, the Hospital said my BG alone should have resulted in my arriving unconscious and on life support equipment by Ambulance instead of walking in under my own power, but their medical documentation said a Blood Acetone level of 2.5% was documented as being “100% FATAL, no survival possible” so they said my BG alone should have had me arriving in the ER unconscious and unresponsive, but my Blood Acetone level alone should have resulted in my being transported to the morgue instead of the ER because I shouldn’t have even remained alive since my Blood Acetone level at time of T1D diagnosis was over 2.9% but barely under 3% while documented “100% fatal” Blood Acetone level was only 2.5%.
I’m positive that if the Doctors had done more testing on me instead of assuming viral or bacterial infections, I most likely would have been diagnosed with T1D already at least 6 months to a year earlier than mine was diagnosed.
So far I’ve had shingles three times in my life… Twice in the year before my T1D diagnosis and a third time in 2012. And despite my rounds of shingles, they refused to allow me to get a shingles vaccine until 1.5 decades after my third round of shingles!!!
Blood tests are so easy to run and presumably inexpensive since just going to a corner drug store to buy a blood glucose meter is not extreme in price. Hard to believe doctors don’t automatically check blood for sugar levels with at least a finger prick. To me, there is no excuse for what happened to you or to many people who have answered this question in the comments.
Sorry for all our stories. Only hindsight makes us wise. Autoimmune things are tough to diagnose. Good and bad healthcare providers miss the signs. Mark, you had one of the closest calls I’ve read about. Thank you for sharing. My 11 yr old granddaughter was diagnosed with Hashimotos thyroid and told at higher risk for developing T1. This was after enduring a year clearing throat and doing little coughs that we all thought a nervous tic. She finally had thorough testing and started on synthroid. Felt terrible scolding her so long.
I had no thought to own glucometer. My husband is obgyn and cares for gestational diabetes and didn’t really think I had T1 until the night he dragged me to hospital and told me he thought I had been misdiagnosed. Glad you finally got help!!!
I’m so sorry, Mark.
And, shingles 3 times just is beyond sucky. (Sorry, I didn’t know how else to phrase that.)
Diagnosed as T2D first. After a year of frustration was diagnosed with LADA by an endo.
At the end of 5th grade, I had a bad case of the mumps. Between then (1965-1967) and the beginning of 7th grade, I got steadily sicker. My Mom took me to the doctor a couple of times, but the doctor never did any lab work, although I was having spells of throwing up and was losing weight. Finally in October 1967 when I had been throwing up for a week and was down to mere bones, I was rushed to the hospital from my doctor’s office. I don’t think it took them long, with a simple blood test, to diagnose my T1D. In hindsight, I believe the only reason I lived that long with it being misdiagnosed was due to how active I was as a child. Always outside, playing sports, riding my bike. I am sure that held off the symptoms during that time period.
After describing my symptoms over the phone, my doctor initially thought it was a stomach flu, for which I should only drink tiny amounts of fluid at a time.
I was 7. My mom had just died. The shock and high carb desserts from church ladies sent my bg soaring. The doc thought I was psychotic after the death of my mom and put me on antidepressants. I finally fell into a coma for two days before a young internist checked my bg. I still remember the ER nightmares and it’s been 53 years.
Wow! At 7! Sorry you had that hard journey.
mojoseje –
Like Bea, I’m so sorry for what happened to you!
My doctors also thought my problem was mental, but I didn’t end up on antidepressants nor did I actually go into a coma, although I believe I was very close.
Those nightmares and memories are hard!!!
I was diagnosed at the end of my sophomore year of college 30 years ago and, even though I was “old” for what was thought of as a childhood disease at the time, I was correctly diagnosed, perhaps because my dad had T1D as well.
Diagnosed with dm2 because of age. Took 2 years to get diagnosed correctly. Meanwhile I researched how to deal with T1D on my own. Finally a Doctor ordered a c-peptide. Was depressing for me not to know. Was just sure it wasn’t type 2. When I saw nursing journal article on LADA I was omg that’s me!!
I was correctly diagnosed as T1 LADA in hospital but when I followed up at my doctor’s office I found the chart said T2!! Got it corrected ASAP.
*high five
When I finally got an endocrinologist after 25 years of diabetes, he also put me as Type 2. I wouldn’t have seen it except I decided to read the copy of the letter he wrote. So glad I did because I wasn’t going to initially!
Like other, diagnosed with t2 because of age (39) with BSG so high they had to dilute to even measure.
No. My Dad was T1d and a pediatrician. We were on a canoe trip for a week. He and my mom saw the signs ) peeing and thirst) and took me to his endocrinologist the day we got home., I was 12.
I was thirsty beyond a thirsty known before or since. All the thirsties combined! My parents are both t1ds so we went straight to a glucometer once it clicked then dr/tests to confirm. Reading comments here I hope we can help push bg into being a mandatory vital so there are fewer stories like this in the future 😢!
Such a good point! Maybe also the test that shows whether it’s Type 1 or Type 2 after a diabetes diagnosis.
How much “stuff” the people here who were first diagnosed as Type 2 had to go through! And, then the potential affects to their health! Seems like such an easy thing to do.
I’m with you.
Initially misdiagnosed T2 because of age
as type 2 till i proved him wrong with ketones in my urine
Initially T2D because I was 26 and I guess LADA wasn’t a thing back in 1990. It took me almost three years to accept my T1D diagnosis and routine. Thankfully I had a coworker at the medical group we worked for setup an appointment with one of the docs. By the end of that day I was finally on track. Thank you Lu Powell.
#BeWell
I was diagnosed at 36. Internist who made diagnosis said it was type 2 due to age even though I had rapid weight loss (from 125 down to 90) and was in DKA. Kept getting sicker – got into an Endocrinologist who ran more tests and diagnosed T1D. Endocrinologist made the comment that aI almost died.
Holy mackerel, Janice!!! 90 lbs? I’m surprised they didn’t think you were anorexic… (maybe they did and just kept it to themselves). =:o
I’m glad you finally got the help you needed!!
My husband said that I looked like a concentration camp victim (no disrespect to concentration camp surviors)
Yes, understood.
While the cause of the extreme weight loss isn’t the same, the look could not be ignored… a 25% weight loss when you started at, what I assume, was a healthy normal had to be scary!
Yay for the Endo!!
I chose other because being 55 years old the hospitalist was confused when I presented as T1D and not T2D. It took a couple of hours, but he was convinced, so I went home and proceeded with my new life!
In 1985, I was 14 and given the MMR booster shot to enter public school. About 6 months later, I felt terrible. My stomach and back became this purplish color. Went to the ER and I was diagnosed with pancreatitis. Shortly after that, I developed T1D.
Yes. Type II
Dx’d T2 for 8 years before meds quit working. Quite the shock for dx T1 at 67!
It was during my last month of college. One weekend I had rehearsals and concerts (music major) and started feeling tired and weak. For months I’d been losing weight while eating a ton and having to get up to pee every night.
That weekend I started to feel “off” and had to get a coach to drive me back to my dorm. The next morning I woke up and went to one of the doctors available. He said it was probably just indigestion. So I ate a bunch of tums. The following morning I could barely walk across my dorm room to the phone to call for security to drive me to the clinic. They wanted to take me to the emergency room but I declined. The student health doctor (whom I’d avoided due to her frequent questioning of female students’ possible pregnancies) was the one who diagnosed me.
I ended up in the hospital for 5 days, missed 3 concerts I was supposed to play, and played my senior recital one week after.
II was 10 years old and had classic symptoms, which were recognized by my mother, who was an RN. The GP’s first assessment was that I was fine (because it is rare for a child to be diabetic) but that my mother needed mental health care. After several weeks, in an effort to prove his point to my mother, he finally allowed a urine test for me.This was 1962.
Wow! Did he ever apologize to your mother?
Cynthia!
Your story is so similar to mine! Like Janis asked, I hope he apologized to your Mom!!! (My Mom needed to get an apology, too.)
*grumble, grumble
I was about 10 years after you, but doctors still treated women like they don’t know their own children.
I was diagnosed with Type 2 diabetes. Turned out to be LADA.
Type 2
T2 which came with a Draconian diet that I stayed on for five years. After an A1C of 12, my doctor called and said we have to talk, and he left for vacation. The next morning, a Saturday, when I was having trouble seeing, I went to Immediate Care. Pills that didn’t work started, then insulin, then the search for a doctor who would keep me alive. I was 45.
It was 1978 and I was 14 years old. The doctors told my mum that I had leukemia, even though I had all the classic signs of diabetes.
OMG That would really scare the heck out of your parents, not to mention you!
Yikes! =:o
Yes, t2, until husband took me to ER in middle of night for very shallow breathing and disorientation. Misdiagnosis led to poor healing of surgeries, much higher pain levels, fainting during PT, shoulder impingement was probably frozen shoulder. That hospitalization didn’t go well. I overflowed the urine output apron and nurse argued it must not have been empty to start. So much more to story. But insulin helped correct blurry sight, heal quickly without pain meds from surgeries. I did ask shoulder surgeon afterward if he was aware of my high fasting bg and he said no. Mistakes were made. T1 should have been caught by numbers gathered. But we didn’t get them until after surgeries reports.
Timeline:
11/28/2005 Fasting BG 96 still normal!!
6/30/2006 BG 122 (Fasting Pre-op) DR APPT
7/30/2006 Cervical Disc Fusion
8/18/2006 BG 233 (Fasting Pre-op)
8/23/2006 Shoulder Impingement Surgery
9/18/2006. BG 321 (Diagnosed Type 2) given diet, but had already been low carb for 2 yrs.
9/23/2006 BG 322 (ER/Hospital /dxT1) A1C 9.8
First insulin injection!! Yay! Sorry for long post! Question got me going!!
Your post isn’t long! Thank you for sharing your story. I am sorry for all the people here who were misdiagnosed… the Type 2 thing scares me! I’m so glad you survived your doctors! I survived mine, but some miracle, too. 😀
Interesting that you should talk about shoulder impingement. Being a T1D, I’ve had continuous problems with shoulder impingements since the late 1980’s. I’ve had surgery on my right and left shoulders, and still have serious pain and limited mobility in my shoulders.
In 1955, after having chickenpox, rubella (German measles) and bronchitis during the first half of third grade, when I was still losing weight, needing to urinate frequently and feeling very sick, my mother took me to the pediatrician during school break in April. I think the fact that my doctor knew my grandfather and other relatives who had been diagnosed with diabetes was the reason he did a urine test. The test results sent me directly to the hospital for the next month with the diagnoses of T1D.
T2D
As an adult: First a UTI, and then Type 2 and was sent home on Metformin
I put “other” because I initially self diagnosed as a T1 even though medical staff had me as T2. The nurse at my family doctors flat out said, “at you age (51), you’re type 2. Fortunately, the doctor listened to my reasoning. She still diagnosed me as T2, but instructed me to go to the ER if I started vomiting. Two days later, in the ICU with DKA, lab results confirmed my T1 diagnosis. I credit the family doc for giving me in-case-this-happens instructions, but honestly, someone with an A1C of 13.9 and is losing enormous amounts of weight should be sent to the hospital immediately to check for DKA.
I had blisters appear on my hands, feet and face. A dermatologist told my mother I may have been putting acid on myself to self-harm. She finally insisted my family doc do a glucose test and my blood sugar was over 700.
I had chicken pox, mumps and measles in my childhood as no vaccines until polio. I was loosing weight and drinking soda like crazy and eating bananas. Had a sore throat. I was very active so mom didn’t think there was anything wrong until I had a check up to go to summer camp in July 1955. Was diagnosed in Everett, WA but did not get sent to the Virginia Mason Hospital in Seattle, WA for a couple days. Do not know why. I had a glucose of 400 and was starting to go into a coma. The doctor did not know if I would live tnrough the night. My poor mom! Doctors knew very little about insulin and treating T1D then. That is why I eventually became a Certified Diabetes Educator as well as dietitain to know as much as possible and help as many others as I could. So glad I did!
Would have caught the t1d much earlier if my family doctor recognized that I had a rash associated with t1d for months before my diagnosis based on glucose levels.
I said “other” because I wasn’t sure if this counted as a misdiagnosis.
Nearly 51 years ago, I was 5 and I had all the classic symptoms: being thirsty all the time, frequent urination, immense fatigue, being hungry all the time but losing weight, fruity breath, bed wetting, mood changes, etc.
My mom took me to the doctor who said nothing was wrong with me. He said I was lying and that I was just worried about a significant move that was coming up. (The pictures of happy fishes and boats made my mom think otherwise.) She took me to another (supposedly more experienced) doctor who said I was just worried and that she should just take me home and everything would be fine.
She took me home but my shallow breathing and general pallor and lack of “aliveness” made her worried that I would stop breathing overnight, so she put me in her bed that night. The next day, she took me back to the doctor’s office and the next doctor said that I was lying, that I was just worried. He called me and my mom hypochondriacs and he said my mother was overprotective and “no wonder she’s worried with a mother like you.”
My Mom became angry (which scared me) and said, “I’m not leaving until you figure out what’s wrong with my daughter!”
I was sent for a chest X-ray and could not walk the hallways to that area. A kind orderly/nurse saw me in the hallway and went to get a wheelchair for me.
The X-ray revealed nothing and so, finally, a senior doctor was called in.
He immediately said, “This girl is very sick. Get an ambulance, she needs to get to the hospital.”
My mom and I were bundled into an ambulance and I kept trying to “sleep”, but I was probably close to going into a coma. An hour and a bit later, I was in the ER of a hospital where the doctors diagnosed me with diabetes.
I spent a month in the hospital from Thanksgiving to Christmas Eve.
So…. I don’t know if diagnosing me as “fine, she’s just worried” counts as a “misdiagnosis”.
Karen, That definitely qualifies as misdiagnosis. I am so glad your Mom was so proactive!
Most definitely
Thank you, Janice B and Mary Dexter!!
10 weeks pregnant with our 5th child my fasting lab glucose was elevated. I was sent to a high risk OB, diagnosed with gestational diabetes, on insulin by 15 weeks, delivered a healthy baby girl at 38 weeks.
I went back to work when she was 5 weeks old, worked with another RN who was a T1D and she insisted that she check by blood sugar and it was over 600. Saw my OB the next day who immediately sent me to an endocrinologist and she told me that I was not a gestational diabetic but had developed diabetes just before getting pregnant.
I’ve read there are at least 2 types of gestational diabetes. In one type the diabetes disappears after giving birth. In the other, the woman stays diabetic after giving birth.
My pediatrician said that I had the flu, 2 days later I was at the hospital and almost died.
I was correctly diagnosed by my mother because an older cousin had already been taking insulin and my symptoms resembled hers before she was diagnosed as T1D…fruity smelling breath, the fruity smell in the bathroom after I peed (frequently), weight loss, thirst, obvious fatigue. Within a week a doctor confirmed.
Some people think T1D differs from T2D. But I met a tall sturdy chap with T2D who was under good control with oral agents. He was under family stress with his five kids and under job stress working irregular hours at Starbucks, no set schedule. He had to sleep with a phone under his pillow, because he was always “on call!” The size of his irregular meals determined the amount of oral agent he took. In less than one year, the stress, and perhaps his overuse of an oral agent finally wore out his pancreas. He went from T2D to T1D. I really believe T2D patients should be cautioned about overusing oral agents. And no one should be forced to work irregular schedules making it impossible to live a normal family life.
He was more likely one of the 40% initially misdiagnosed.
https://diabetesjournals.org/care/article/44/11/2449/138477/Adult-Onset-Type-1-Diabetes-Current-Understanding
ADA published this research in October 2021. But at the last conference, did they broadcast that over 60% of those newly diagnosed with autoimmune diabetes are over 30? Adults, not little kids. And that 40% of those are initially misdiagnosed T2. No. Instead, they announced their new policy will be less focus on BG and more on obesity. I guess 40% rate of misdiagnosis is acceptably low. So now the rate of misdiagnosis will climb, patients will need to weight until their blood sugar is so high their bodies consume and poison them. What is T1D doing to prevent this from continuing?
Hi Mary –
Those percentages are so large!
I’m not even sure what to say… kinda leaves me speechless.
The obesity issue seems to be clouding observant and…. can’t think of the word. But, the word I want would be along the lines of how one doesn’t make up one’s mind on something until the facts have been studied and analyzed and more data acquired when things are cloudy.
I have experienced the shuffling off of my problems as weight (and age) related without a doctor even doing tests or looking at me.
So, I think this is a “not enough time” issue on some level. Doctors are just not given enough time to chat with and really analyze patients. Then, I’m sure (although, I’ve _no_ proof of this) that weight loss management is something like a job metric… i.e. the doctors’ bosses say, “get your patients to lose 10% of their body weight and you get to keep your job.” I could be completely wrong on this, but there has to be a reason so many doctors hyper-focus on weight (and age) as causes of things that turns out not to be true.
So, in addition to the high misdiagnosis of people over 30, there are two almost conflicting things happening:
1) the need for doctors to help their patients with weight loss (which they are not really trained to do)
and 2) the hyper-focusing on this issue that causes other problems to be missed.
I would love to see the peptide test (I think that’s the one that tells the difference between T1 and T2) as an automatic add when an A1c reveals diabetes!
No. My family and co-workers knew something was wrong. I was Peeing like a racehorse, but never passed up a water fountain. (1968)
Don’t know
For several weeks I had the classic symptoms. My roommate took me to an ER. The doctor there said that I had a strep throat. My roommate said nope and took me to another ER. The person filling out my paperwork later told me that she knew immediately what my problem was based on what I had told her. The ER doctor quickly confirmed what she had suspected.
No, but my GP couldn’t make heads or takes of my annual bloodwork. Sent me to the hospital, where over the course of 4 hours they re-ran the blood work another 4 times, trying to figure out why I was still walking, talking, seemingly normal. I was in DKA and “should have been in a coma”. They admitted me to the ICU, where the resident diagnosed me T1D at age 42.
Our daughter was not misdiagnosed, but was in DKA by the time she was diagnosed, in part because the symptoms that were present were misinterpreted for other things. She was 15 months old, so prone to growth spurts that masked T1D symptoms. For example, she started wetting through her diapers, but was a weight that put her at the cusp of changing from one size to the next. She tinned out, but was an age at which a number of toddlers in our family grew in height but not weight, so looked taller and skinnier. She was asking to drink a lot, but her primary liquid intake was milk/formula, so we thought she was increasing intake due to a growth spurt. Her endo told us in the PICU that she’d likely been emerging as a person with T1D for up to six months at that point, during which time she’d had at least two but likely three well-child checks. It’s why we’re huge proponents of the “Test One Drop” initiative – would have been much nicer to pick it up earlier, before she developed DKA.
I was misdiagnosed as a Type 2 because I was 28. I was sent home with a prescription for Metformin, some pamphlets about Type 2, and told to diet and exercise. I had just lost 12 pounds in 2 weeks with a fasting blood sugar of 245 and A1C of 13.1. I had to advocate for months to get a referral to a CDE, nutritionist, and an endocrinologist. My first endocrinologist said she thought I was a Type 1 but the medication was working fine so she did not order any labs. I switched primary care doctors who said she did not think I had Type 2 and referred me to a new endocrinologist. It took a while to get a new patient visit, but he put me on insulin that day and before the lab results confirmed I was Type 1. This was about 9 months after the Type 2 diagnosis. My body was so relieved to receive insulin; I no longer felt tired all the time.