Sarah Howard
Sarah Howard has worked in the diabetes research field ever since she was diagnosed with T1D while in college in May 2013. Since then, she has worked for various diabetes organizations, focusing on research, advocacy, and community-building efforts for people with T1D and their loved ones. Sarah is currently the Senior Marketing Manager at T1D Exchange.
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If you were diagnosed with T1D as an adult, were you first misdiagnosed before you got the correct diagnosis? If yes, with what were you misdiagnosed? Select all that apply to you. Cancel reply
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I chose that I was diagnosed as an adult but NOT misdiagnosed because I was technically an adult – 19 years old. My sister was in her late 40s when she was diagnosed and she was also diagnosed correctly.
Misdiagnosed as T2 while in DKA at age 40… put on wrong medication and almost pushed back into DKA with 350 blood sugars for almost a week while waiting on the antibodies test results. It was a frightening and unnecessary situation.
I was misdiagnosed at 15 and before, but I don’t consider that an adult. My husband was diagnosed at 62, but was misdiagnosed as a type 2.
I was misdiagnosed as type 2 by a PCP at age 38 despite classic T1D symptoms and put on a sulfonulurea. On my own, I sought out an endocrinologist and was immediately put on insulin. The rest is history.
Diagnosed at 17 I thought I was an adult. But DKA in the 80’s caused my diagnosis. I never heard of these other things before 20 years ago. Except gestational which I would be precluded from.
I was 49 years of age as my husband called his endo Dr. who put me on insulin over the telephone from the reading of HIgh on my husband’s meter. When I saw this specialist 3 hours away, he said I am puzzled because you don’t look like a type 2 diabetic. I was going through menopause and was put on birth control which seemed to trigger the high numbers. But nonetheless, I needed insulin to eat food and keep the numbers down. So the specialist called me a 1 and 1/2 – inbetween a 1 and a 2. Then the term LADA came into being, and from being a 1 and 1/2, I am now a type 1 with LADA. I am not overweight and it seemed to be an autoimmune attack at menopause. My local GP tried glucophage which made me sick to my stomach.
I was 21 in college and the student health services diagnosed me with a bladder infection. I got sicker and they switched me to a different antibiotic. I got sicker and went to my boyfriends family doctor who diagnosed me with ulcers. I got sicker and sicker and finally went to emergency room where they did a blood test and diagnosed me as Type 1. It was a tough week and all right before finals.
Sounds a bit like my story. I was 28, in grad school, exams and essays were bearing down, and I thought it was just some weird kind of stress reaction. Kept getting worse. And what did ravenous thirst and peeing have to do with anything??? Fortunately my M-I-L was a medical professional and told my wife it might be diabetes. Dr said I was maybe 24 hrs from aka (“you probably wouldn’t have been able to wake your husband up tomorrow morning”). I was correctly dx’d, but it was 1983, before the T1 nomenclature was introduced, so it says “Juvenile type” on my record.
I was diagnosed at the ER in DKA. I believe that’s why I got the correct diagnosis. Had it been through regular doctor appointments, I’m not sure I would have been diagnosed correctly due to my age 45 at the time).
1982, I was 30 years old, so the Dx was T2. No risk factors (especially in the family tree), classic T1D symptoms. After a feww months of scolding, I was put on 15U of Nph once a day and sent on my way. Of course, I figured that was it, did the injections and then DKA. Found by a neighbor. Got the correct Dx in the ER
I was 40 when I was first diagnosed as a T2. Seeing no reason to question that, I went on oral meds for treatment, but could never get my BG below 300. It averaged between.400 – 600 most of the time. I just thought I was a bad diabetic. My youngest two children were diagnosed 6 years later, so started the fight with their T1D and didn’t worry about mine. When sitting in on a training with my son, I said something that made his CDE question my diagnosis. I chose to start seeing his endo who changed my diagnosis and treatment to that of a T1. I now have an A1C of 5.5 with 93-4% time in range. It’s been nice, but the retinopathy I now deal with makes me wonder if all those years of being so high all the time could have been prevented with a proper diagnosis to begin with. That’s a question I will never know the answer to now.
It’s so interesting to read what happened to others. I was 32 in May 1980 and had unexplained weight loss so I decided to schedule a physical. They said they would schedule it in September so I said, let me tell you why I think I need a physical and told them about the weight loss. They said, we’ll see you tomorrow. My GP did a quick blood test and told me I had juvenile diabetes. He wanted me to have a glucose tolerance test at the hospital the next day. As he was leaving the exam room, he said, “By the way, have you been thirsty?” I just about fell off the table. I had been constantly thirsty for months and peeing every 5 minutes. Had all the classic symptoms and had thought they were just weird, except for the weight loss.
When I went for the glucose tolerance test, they did my fasting blood sugar and came back to say that the glucose tolerance test would make me sick and that my doctor had all he needed for my diagnosis.
I walked in a haze, as there was no diabetes whatsoever on either side of my family going back generations. 40+ years later, I’m still the one and only.
I was 32 and developed blisters on my hands, feet and face. After many different diagnosis, including a dermatologist who accused me of putting acid on myself, my mother asked them to do a blood sugar test. I was over 500, and diagnosed as Type 1.
Electrolyte imbalance. Because I was thirsty. 🙄
Then they eventually diagnosed me correctly with T1 but treated it as T2 insulin-dependent. I got long-acting insulin only for the first year until I got in to see a specialist and it was awful.
I was pregnant when my glucoses were found to be elevated. After delivery it was then decided I was Type2. However My elevated glucoses persisted even though I was normal weight and oral medications had no effect. Furthur testing was done by another endocrinologist and it was decided I was a Type 1. I have a younger brother who was diagnosed at Age 7.
Diagnosis didn’t pertain to me, as I had passed gall stones that damaged my pancreas which ultimately abscessed and was removed, making me an instant type 1 diabetic.
I was diagnosed correctly by my family and then family doctor at 18 y/o (adult-ish). Was a week before my first set of finals in college. I had lost 10lbs in a couple months that I couldn’t afford to lose, increased thirst, falling asleep in class after lunch, leg cramps at night (due to dehydration). My mom suspected diabetes so I got urine glucose test strips at the drug store and the whole family tested. Mine was the only one that changed colors. Made an appt with with doctor, who did official lab work. Fasting BG was mid-300s, no ketones. My fasting BG at my physical exam just 2 months earlier had been 121. I feel fortunate that we caught it before DKA set in.
My mom was diagnosed later with T1D at age 57, but only be after being misdiagnosed as a T2D. She presented with fasting BG in 300s like me at her annual physical. Due to her age doctor assumed she had type 2 and put her on multiple oral medications for the next few months that did not improve her sugars. I finally convinced her primary doctor to test her autoantibodies (double positive) and c-peptide (barely detectable). That finally convinced her endo to start insulin. Thankfully, it seems there is growing awareness that T1D is not just juvenile diabetes anymore.
At 17 I lost focus with my eyes for a brief time. Eye Dr said I was tired. Two years later happened again and eye Dr accused me of using marijuana. Six months later went to family GP who recognized diabetes. Marking 51 years now T1
I was 66 and my internist found elevated glucose in a routine blood test. He told me I was type 2 and prescribed Metformin, which made me feel like I was walking through a tunnel made of Jello while half asleep. My brother had been type 1 from the age of 9 and growing up I was very familiar with his symptoms and his care. It never occurred to me that someone old enough for Medicare was a type 1. But I didn’t like my treatment. When I asked internist for a recommendation for an endocrinologist, he told me type 2 was his “bread and butter” and he dealt with it all day long and a specialist wasn’t necessary. On my own I found the Mount Sinai Diabetes Center and a great doctor there told me, before even testing, that he guessed I was type 1. And I was LADA–was able to manage at first on low carb diet and didn’t go on insulin for 2 years.