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Were you misdiagnosed with another condition before you were diagnosed with T1D?
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At the age of 31, I had no symptoms of diabetes, either type, but my blood sugar was abnormal at my yearly checkup, and so it was assumed to be type 2. After three months of taking oral medicine and trying to convince the doctor I was not forgetting this but no decrease in my hemoglobin, I went to the hospital to start insulin.
I would not have been aware of any of this for who knows how long.
Once but several months ago.
After a routine blood test my primary care doctor told me I had type 2. I was not feeling sick in any way. Since I was age 66, I had no reason not to believe him. But the Metformin he prescribed made me very sick. He was disinterested so I found an endo on my own, who diagnosed type 1 immediately.
Urinary tract infection, my pediatrician told me to drink cranberry juice.
I was age 20 and had persistent yeast infections until it was determined that undiagnosed T1D was the cause.
Yes. I was seven and my mother died on Aug 1. The church was bringing us (dad and three siblings) dinners and desserts every night. Halloween rolled around and I was “acting strange” wetting my pants, walking into trees. The doctor diagnosed me with psychosis stemming from grief and put me on a couple of antidepressants. I had developed a cough so I was given cough syrup (pure sugar). I slipped into a coma and no one knew what was wrong with me. It took two days until, finally, a young doctor on the emergency staff figured out to test my bg.
Our family doctor said I had a stomach flu and instructed my parents to give me small amounts of liquid on the hour every hour.
Type 2
Yes, Type 2 because I was 36. Even though it was rapid onset and I kept loosing weight and getting sicker on Metformin. From 1st mistaken diagnosis by Internist to correct diagnosis by Endocrinologist was 1-1/2 months
My GP knew instantly. Besides all the classic symptoms, extreme thirst, constant urination, and unexplained weight loss, a quick test gave him all he needed, there was no question in his mind. And even though I was 32 at the time, he got me started on insulin almost immediately. He first had me get a glucose tolerance test at the hospital lab, but they told me they wouldn’t do one once they saw my fasting blood glucose; they said the test would make me sick and my doc didn’t need any more information for the diagnosis.
I had a qvery similar experience 32 years ago. I started with my GP and he put me on a strict diet and split mixed insuli daily injections. Then went to an Endo who understood T1d.
I was recovering from jaundice when sugar was detected in my urine and the rest is history.
diagnosed with Type 2 by my GP at age 43. put me on glucophage and avandia but my A1C kept climbing. said I’d start on Lantus after the holidays if it didn’t go down. found my endo who was the head of adult diabetes center in med center in Houston.
The doctor I took my son to was originally mystified by the symptoms I told him that my son was having because they weren’t classic symptoms. My son had a bad stomach ache and headache for days. Only the night before taking him to the doctor did he surprise me by asking for a glass of water at bedtime because his mouth was dry. He was in DKA. The doctor suggested doing blood work just at the end of the appt. or to wait another day to see if he improved. I’m so thankful I said to do that because by Sunday when we finally found out the results his blood sugar was over 700.
I was 39, so diagnosed at type 2 and put on a medication to make my pancreas produce more insulin. Obviously, it didn’t work!
Kathy — trying to get a permanently unemployed pancreas to work harder is like trying to get a dead horse to turn over. Good luck with that !?
No. My GP did a good job. He had my blood tested immediately. It showed high blood glucose. He tried me on pills first (Type 2). After a few days to a week, he tested my BG again and immediately put me on Regular and NPH insulin (1977).
I answered yes but only based on the treatment my general practitioner gave me prior to my visit with my endocrinologist. She prescribed Glucophage to hold me over until I visited the endo because she didn’t know if it was type 1 or 2.
Was diagnosed with DM2 for two years. I knew I didn’t have type 2 but doctors said I did. Finally and Endo did a C-peptide and said I was LADA or adult onset T1D
Yes. Diagnosed T2D first.
After c-peptide test showed T1D. Adult onset.
Yes, I went through a week of getting sicker and sicker – no one did a blood test. Thought I had a bladder infection then ulcers. Wound up in ER and they did a blood test in the first few minutes.
After reading all the other comments, I count myself blessed. My mother had a brother with T1D, so she understood the symptoms I was experiencing and took me to a dr. immediately and there I was diagnosed, at 10 yrs old.
My answer was no. When I went to the ER with a BG in the 400’s the ER docs assumed it was T2D since I was 55 at the time. However, with some insulin on board and my body’s reaction to it, that convinced him it was T1D. I went home to have a several month “honeymoon” taking only small amounts of basal insulin and eating low carb.
So I had a severe case of the mumps at the end of fifth grade. Slowly, for over a year, I began having symptoms that no one picked up on. I was a very active kid so that may have staved off the damage done to my pancreas by my immune system during that mumps illness. But, I also had a sweet tooth, so that didn’t help. Finally after many trips to the doctor the previous year, at the beginning of my seventh grade year, I started vomiting and could not stop. I had lost so much weight during the past year and that didn’t help. I looked like a skeleton and all I could think about was drinking water and then, of course, peeing a lot. I was DKA. My Mom, again, took me to our family doctor who sent me straight to the hospital where I was diagnosed Type 1. I realized years later that I was probably only inches away from a coma.
Yes, I was misdiagnosed with Type 2
At age 18 months, I was diagnosed with chronic diaper rash.
I was diagnosed at age 50+. My primary care (PC) doctor was absolutely certain I was type 2 and treated accordingly. After 6 mos. of totally useless oral medications I visited an endocrinologist (my PC refused to refer!) who ran the appropriate blood work to determine I was in fact type 1 and insulin dependent. Needless to say, I sought and found a new PC.
Yes, I was diagnosed by my family physician as type II because I was not a child. I was treated for type II for 2-3 years and could never get my A1C down. I finally drove an hour to an Endo and hour back. As soon as the dr walked in he said, Hmmm.. I do not believe you are type II but we will do a peptide test just to see. Sure enough, I was not and then was diagnosed as type I. Most general practitioners do not know enough about diabetes to treat patients with it. GO TO AN ENDO! I learned!
Mis-Dx’d T2 eight years prior (no tests except BG); meds stopped working at all did antibody tests and got correct dx put on insulin immediately!
o. When my mother took me to the pediatrician, after three months of almost continuous sinus infections in-between bouts of measles followed by chickenpox and then rubella, I had lost lots of weight and was suddenly having problems controlling my bladder at night. After a physical exam followed by a urine test he told my mother to take me directly to the hospital. He knew my grandfather had diabetes and used insulin. He wanted me to have more labs to confirm his dx of T1D. This was in 1955 when I was 8.
Yes 1 Er Dr originally said I had mono. Then the next day I saw a different Er dr and he said I had type 1.
No, I wasn’t. My middle brother wasn’t necessarily mis diagnosed; they just couldn’t figure out WHAT was wrong. In rural mid-west, in 1972 T1D wasn’t at the front of their minds for a 1 to 7 month old.
I was initially diagnosed with Type 2 diabetes but another endocrinologist checked my GAD Antibodies, dx’d LADA, no meds and I monitored am blood sugars until diet and exercise no longer worked to keep me in range.
I thought I was answering another question and put no, but the answer for me is yes. The doctor diagnosed me with fibromyalgia. I was put on a light dose of steroids which made it very obvious when I went back that I was metabolically dysfunctional. I was not overweight and had lost more weight. At the time because I was in my late 30’s I was diagnosed with type 2 after a very dangerous glucose tolerance test. They sent me home after the glucose tolerance test with glucophage and with numbers extremely high. I was on glucophage for about 6 months? and then was put on insulin when that did not work. Doc at time said I was of the 10% of type 2s that need insulin. This was in the early 90’s before LADA was a term at least that he or I had heard.
My dad was Dxed in 1940and went on MDI of PZI the only insulin at that time. He switched to NPH in the 50’s and thought that it was ‘greater than sliced bread’ In 1964 I went immediately to NPH and Regular and Hated it, no control at all.
I was 7-years-old when diagnosed with T1D in 1966. My parents thought something was wrong with my bladder or kidneys because I was so thirsty and running to the bathroom all the time, day and night. They took me to the hospital and one urine test and the doctors had it figured out.
Was diagnosed with pancreatis in 1985, shortly after receiving the MMR shot that I need to play soccer in high school. My mother limited my vaccines as a child because she didn’t think they were necessary if you had a strong immune system. But I was arrogant, and I wanted to play. So.
Shortly after, I developed stomach pains, which were unbearable, vomiting, thirsty all the time and trouble digesting fats (my poor little capillaries).
After testing, my family doctor put me on pancreatin which I did help AT ALL. Plus, I couldn’t play soccer or any other sport which I was bred to play.
About 1 year later I developed full blown diabetes and was put on low dose insulin, which I still take (about 19/20 units a day).
Thanks to my insulin pump, I am able to play tennis. And, I just won my first match playing PBCWTA today :- )
Recently tested my Mumps antibodies (30+ years after the shot), they were abnormally SKY HIGH. But my endo. expected that. We both laughed it off.
I was diagnosed at 5 as a hypochondriac and worrier. There was “nothing wrong with [me] and it must be in [my] head.”
If you’re talking about any time in my life, yes. I had measles and German measles (Rubella) when I was a child … some 60 years ago. I was also diagnosed as suffering with a red-green eyesight deficiency (Anomalous trichromatic) some 40+ years ago.
As for diabetes, I was diagnosed at the age of 21, and I don’t believe that there was any disagreement about the diagnosis as when I went to the hospital I was in a virtual state of collapse and I’d lost 27.5 pounds according to my GP’s scales. (In those days, blood glucose meters hadn’t been introduced to doctor’s surgeries … over here in the UK, at least. Testing, at that time was made by mixing 5 drops of urine with 10 drops of water and adding a tablet, then comparison of the resulting colour [color] against a printed sheet.)
Apologies to anyone that read my diatribe but I forgot to add that the 27.5 pounds of weight loss was within 4.5 days.
I was diagnosed as T2 because I was 42 at the time.
Because I was 46, I was first diagnosed with Type II.
type 2 but I knew it was Type 1. I was the 4th in my family with type 1 and I am a nurse. I checked my ketones, medium, and I ran and checked later large ketones. Calle d my primary to tell him. he said come in tomorrow.
At age 6, I don’t recall my parents ever saying anything about misdiagnosis. So my answer is no. My mother was worried I had leukemia because I was so skinny, but there was no misdiagnosis that I recall. Just Mom’s absolute relief it was T1D. Her comment was “she can live with diabetes”.
I was suffering symptoms most of the year prior to my T1D diagnosis in September, 1991. And until my T1D was properly diagnosed, nobody bothered to check my blood sugar or anything else to check for Diabetes and instead diagnosed my symptoms as having been caused by various viral or bacterial diseased or illnesses they prescribed antibiotics and other medications trying to treat instead of doing the testing they should have done that would have resulted in the correct diagnosis the first time.