45 Comments
If you were diagnosed with T1D as an adult, for how long did you notice symptoms before getting a T1D diagnosis?
You must be logged in to post a comment.
© 2023 T1D Exchange. All Rights Reserved.
“Other” as I did not notice any symptoms and was diagnosed by my bloodwork at an annual checkup. It took two months for the type 2 diagnosis to be converted to type 1 as medications were not impacting my BG at all.
My mom was diagnosed at age 57 and had the exact same experience.
I was diagnosed at five years old not as an adult
1977, age 23. I said, within one week, but it could have been a few days longer. I don’t remember.
I was sick just prior to the onset of complete loss of energy. I was exhausted walking up a flight of stairs. I was drinking water non-stop. I knew something was wrong and made a doctor’s appointment right away. Back in those days, a person could get in to see a doctor within a day or two. Blood work was done, and I was diagnosed as diabetic immediately. The doctor put me on pills (I don’t recall which ones). After a few days my blood sugars were still high. He then put me on a regimen of NPH and Regular insulin, which I stayed on for the next 21 years, until I got an insulin pump in 1998.
Very similar to my experience. Within a month of diagnosis I was on NPH insulin, at first 1/day than split to 2/day. I can’t recall when I went on MDI using Lantus and NovoLog. Finally agreed to try using an insulin pump in 2011 after worsening and more frequent serious lows. I LOVE pumping insulin and hope I never have to return to MDI.
I was working as a supervisor in a challenging job. I had grown up with a diabetic dad and was familiar with the warning signs of diabetes. I lost 13 pounds in the space of two weeks, dropping from my normal 120 lbs to 107 lbs, while experiencing excessive thirst and frequent urination. When I called an endo to make an appointment, I strongly suspected I had diabetes. That was confirmed by a GTT. This was back in 1976 when I was in my late 20’s.
I never felt the symptoms. I had a visit from someone I hadn’t seen for several months. He said that I looked sick. I went to a GP for bloodwork and was diagnosed Type 2 because I was 29. I struggled for 5 years before being diagnosed Type 1.
Initially misdiagnosed as T2
Unaware until routine blood work
Although I selected “1-3 months of feeling symptoms”, this was after I’d noticed that ‘something’ wasn’t right. After seeing my own doctor about how I was feeling he weighed me, took my blood pressure, examined my ears and throat, etc. After 4 days, I returned to see my doctor who decided to a urine glucose test … this was, obviously, before the days of home blood glucose testing … and even doctor’s surgery blood glucose testing. The tablet, dropped into 5 drops of urine and 10 drops of water, turned bright orange, which indicated I had a high level of glucose present.
My doctor wrote me a letter there and then and requested that I go immediately to my local hospital. I was admitted to hospital and started insulin injections on that very same afternoon.
About 4 months before my diagnosis, I made an appt with a doctor on the pretext of having a bad cold because I hadn’t felt well for quite a while. I didn’t know what was wrong, but I do remember trying to convince my husband we should buy mortgage insurance for our new house so I must have believed my health was pretty bad. When I joked with the doctor that I was “pretty sure I had a brain tumor” because I’d been so tired, he said that I “wasn’t 21 anymore” and my fatigue was “normal” for my age and workload (I was 32 and starting a new job as a professor). A diabetic friend eventually diagnosed me after I developed the classical symptoms, lost 15 pounds, extreme hunger and thirst, and became legally blind.
I’ve always said six weeks but the “1-3 months” answer seemed wrong. It was a lot closer to one month than three. I was in grad school at the time and turned 28 in the midst of it coming on. I had a nasty cold in mid- October, got over it by early November, then mid-late November started having symptoms I didn’t know were T1 until I was dx’d a week or two into December (exact date lost in the midst of time and routine destruction of old medical records). Usual stuff: thirst, excessive urination, headache/nausea/tiredness. Didn’t know it meant anything (I tried to blame end-of-term angst) but it kept getting worse. When my wife finally hauled me to the GP, the doc estimated I was within 24 hours of DKA. So it went from zero to acute in about a month.
This was 1983.
In 1969 I was diagnosed at 19 years old, 2 years prior was suffering eye issues but none of the eye Drs figured it out.
I had meningitis about 6 months before my T1D diagnosis. I had some vision issues after the meningitis which I now believe was related to the diabetes but the true diabetes symptoms (thirst and constant trips to bathroom) were just the week before I was diagnosed.
About 4 months ago
Like some others here, I had no symptoms and was stunned when routine bloodwork at an annual physical showed high glucose. I was 66 years old. My longtime internist told me I had type 2 and that seeing an endocrinologist was unnecessary because my condition was his ”bread and butter.” Because Metformin made me sick and because my brother had type 1 from childhood, I found an endocrinologist and was diagnosed immediately. That was 4 months after initial blood test.
Two years! Doctor assumed I was T2D because of my age and weight. New doctor ran a cpeptide test and my pancreas was not making any insulin at all!!!
5 months of symptoms before a medical diagnosis at age 51, but I diagnosed myself with T1D within 2 months of first symptom using doctor google. Just didn’t realize how bad a disease it is and the weight loss was fantastic.
I have to admit, I felt great, looked great and had lots of energy until one day I didn’t (severe DKA).
It was caught early and I don’t remember having any symptoms. I was diagnosed as type 2 but more testing was done 3 months later and my endo called me the next morning to start insulin.
Other – I never had symptoms, at least not that I noticed. I was in pharmacy school and had to do a health screening as part of a class assignment. My A1c was 7.2%
My answer was 4 – 6 months. I was puzzled by the symptoms, when I sought medical care I had an immediate diagnosis.
It was a striking Thanksgiving holiday week (I was 19). I had to go to the restroom at each store we went to, while shopping. My mother said, “…that could be diabetes. Check that when you get back to school.” I shrugged her off. Once back at school, after the break, I visited the university medical center where blood work was take and knew it was diabetes…EVERYONE started being overwhelmingly nice and cordial, as I waited for the primary care physician.
1-3 months. I was on a tough chemo/immunotherapy regimen and attributed extreme fatigue and thirst to that. Oncologist didn’t react when I explained symptoms. Little did I know the immunotherapy was damaging my pancreas! Wound up in DKA in ER!
I had no symptoms.
I said 1wk-1mo only because the question asked how long I NOTICED symptoms. In retrospect I had them for over a month but didn’t recognize them as symptoms. It was only after collapsing on the street during a walk due to severe leg cramps that I visited my doctor. Like most adult-onset Type 1’s, she misdiagnosed me as a Type 2. I walked in to a Type 2 specialist who took one look at me and said I probably was not Type 2. Since 10% of Type 1’s are adult onset, I don’t understand why so many doctors still believe Type 1 is only for “juveniles.” Why hasn’t medicine found a way to more clearly distinguish between these two very different medical conditions after all these years by renaming them?
I answered 7-12 months but it may have been 4-6 months. I was in the USAF on temporary duty (TDY) in Korea when I began noticing extreme thirst and frequent urination. I did not realize they were symptoms of T1D at that time.
For me it was about 6 months but I also didn’t realize that thirst and excessive urination were symptoms of anything! I thought the thirst was weird and concluded that I urinated so much due to my weird thirst! It was unexpected sudden weight loss that got me to my doctor. He diagnosed it in minutes and, as he was leaving the exam room, he asked if I had been thirsty. I think I might have howled when I heard that!
I was diagnosed within three months but as a Type 2. I stayed on a Draconian diet for five years. An A1C of 12 and all the classic symptoms of Type 1: thirst, weight loss, fatigue, etc. finally suggested a different diagnosis. Today is my initial (incorrect) anniversary. It was my 40th birthday.
Happy Birthday!
It took a couple of months, but that is because I was misdiagnosed as Type 2 for a long time.
I felt symptoms which I mistakenly took for depression, but knew there was something wrong with me. About 6 months later, I was diagnosed with Type ii. There were a couple of years of gradually inching up remedies with not much success. Finally, a doctor did a C-Peptide and showed that I was not producing insulin!
I put 12 months or longer, I had not felt right for a while but didn’t know they were symptoms. I was nearly passing out while at work, which I though was just exhaustion from long days, I lost weight, and then I started to not be able to see like normal. I went to the eye doctor and he suggested I go get tested for diabetes. So I did get tested, and they did not think it was type 1 at first due to my age (31 at the time).
Strangely I did not have any symptoms..just found out on annual labs that my glucose was high and when they repeated it they did an A1C which was over 8. That’s when I saw an endocrinologist and had the antibody panel to confirm T1D
I don’t remember for sure but I’d guess a week or so after my vision blurred and I felt a frequent urgent need to pee. My mother, however, said she noticed months earlier that I was losing weight.
I was 18 years old when I was diagnosed. I told my parents (a doctor and nurse) that I was really thirsty all the time. It took about a month before my dad had me get a blood test. It was ~450 two hours after lunch. I was started on oral meds and then about a year later on insulin.
In March of 1991, both of my to daughters had chicken pox. By May, was feeling bad with all the symptoms. Went to GP and pegged his finger stick tester at 600+. He directed me to go directly to hospital. There they did C-peptiede testbthat confirmed T1D.
I thought I had food poisoning but turns out I had a viral infection that took out my pancreas. Welcome to be a type I diabetic. It has been 3 years now since getting diagnosed. No it was not Covid related I tested negative every time they checked to see if there was a link to that.
I was told I was diabetic at 17 but didn’t have many signs and still producing tho a little wasn’t til I was pregnant with second child that quit totally producing killer only systoms was very hungry all the time amazing what 6 units of insulin did for me was almost never hungry and my sugars were steady for the first time since 17
I had unquentchable thirst and countless trips to the bathroom along with the fact that my contact lenses that I had gotten two weeks earlier were suddenly not allowing me to see well. So I made an appointment with my optometrist the next day and he suggested I make an appointment with my family doctor because he suspected that I might have diabetes. My family doctor diagnosed me with Type 2 because I was 42 at the time.
I then made an appointment with an endocrinologist and saw him for the next five years before he retired. Three years later I asked him if I could go on insulin because the Metformin that I was on was not working and I had exercised myself down to 104 pounds trying to keep my blood sugar where it should be.
I finally asked the second endocrinologist was I T1 or T2? He said I was always T1. So the first time I was told I was T1 was five years after my symptoms started.
I was 19 when I was diagnosed. I was feeling tired for probably 6-8 weeks prior to diagnosis but was otherwise functioning normally. It was the last 2 weeks before diagnosis when I had the classic symptoms. I went to a primary care doctor and after having me pee in a cup he told me to get to the ER immediately.
I had stopped using salt and was losing weight, however my dad told me that I was watching TV with my eyes crossed and was sweating too much. I went to an Internist to start.
Sadly in late January 2018 my GP noticed my HgA1C was high as was my glucose and I had lost a lot of weight close to 30 lbs. In a nutshell, we went on a cruise with a suspicion that I was possibly a Type 2 so my GP gave me 500 millagrams of Metphormin. Clearly I was misdiagnosed! We went on our cruise vacation and wasn’t feeling well yet when I got home I was in Ketoacidosis and went to ER after 2 days of rally not feeling well and was officially diagnosed on Feb 12, 2018 as T1D. I met my endocrinologist and diabetic nurse who took such good care of me and now present day I’m living life with T1D and controlled with my insulin and very diligent on diet and exercise and feel blessed to have such a wonderful medical team at my hospital’s Endocrinology clinic👍🥰
I was told I was T2D in December 2016 even though all my symptoms were T1D symptoms. The reason? I was over 40. In 2019, 2020 and 2021 I was admitted to the hospital with spontaneous acute idiopathic pancreatitis. Each time I asked to go to an Endo, I was being treated by my GP, and was told I didn’t need to. During my 2021 admittance to the hospital, my GP finally said I should go to an Endo to see what was going on.
It took 2 months to test for sure by comparing my glucose without insulin and my glucose with insulin, but we pretty much knew after my first day of mealtime insulin. My Endo thinks my gestational diabetes in 2006 was actually T1 with a honeymoon period.
So, yeah. Took more than a year. Took more than two. And boy do I wish doctors would/could listen to patients sometimes.
I was diagnosed at age 15 close to 16. Not an adult.
Mine was slow-going pancreatic death precipitated by pancreatitis courtesy of MMR. Acute pancreatitis is terrible – nutrient malabsorption, stomach pains, and weird stool. I was put on pancreatic enzymes that didn’t work. My poor islet capillaries just couldn’t take it. So, after a year, I started insulin because my pancreas just couldn’t perform it’s job anymore. And wow! I felt great on the few units of insulin the doc put me on, but the low blood sugars were terrible. My first A1C after being on insulin was 3.8. Yeah, I walked around with a six pack of coke in my backpack. Saved my life more than once.