Public awareness with symptoms and signs help a lot,not to delay diagnosis.
Your Mum is great
I was diagnosed at first smell. My mother was carrying (mommy superstrength) my comotose 12 year old body into the ER. She said the ER person took me from her and yelled out “KETOACIDOSIS.” He said he could smell it on my breath. Gross!
My PCP observed several years of problematic fasting numbers before bothering to tell me I was “Pre diabetic.” Only later did I learn that any single test of a fasting number above 126 mg/dl is considered “diabetes.” The sad thing is I spend at least 2 years (probably 3) where my doctors had all the data to diagnose me as a full blown diabetic but failed to do anything. After I was diagnosed (five years ago), I went through a range of medications. Typical medications like metformin don’t improve my blood sugar control. I controlled through a very low carb diet and exercise. Two years ago, my doctors agreed to a c-peptide, it came back low. I started to requesting antibody tests two years ago, but have repeatedly denied them. I started seeing another endo in hopes of getting some help. I’ve recently been granted a GAD65 test.
So my answer is, 2-3 years before any diagnosis and still waiting 7-8 years for a definitive diagnosis.
I still harbor some anger at my so called medical team. Oh, and I have some “trust” issues.
I found this report almost incredible.
A misdiagnosis of swine flu by a doctor, and a failure of the emergency services to recognise the severity of the symptoms resulted in a childs death from undiagnosed type 1.
http://www.manchestereveningnews.co.uk/news/s/1216732_paramedic_sai…
I was originally diagnosed T2 because as the doctor said, “Of course its T2, you are an adult.” They sent me home with metformin and instructions to “Get my BS below 150 and see a primary doc” (My BG was in the 300s, I had lost 30 lbs, had a horrible infection, and had ketones in my urine) I continued wasting away for another 2 weeks, afraid to eat anything (food just made my BS go up, but I was also literally starving to death and SOOOO hungry 
and not understanding why the metformin wasn’t helping until I finally saw a primary. Even then they continued to treat me as a T2, until I started asking questions about what I should eat, etc… It was then they realized that I didn’t fit the T2 profile (I was younger, always slim, active, and a vegetarian for 15 years) I finally was sent to get the C-peptide, and put on insulin… Gosh, I love insulin I think part of this initially terrible treatment was because I didn’t have insurance at the time (I am a FT student, almost done with my degree at 31 This was only 3 months ago But I am still struggling to find doctors that are familiar with my particular needs as a diabetic (My CDE specializes more in T2, and I think a lot of my questions often stump her) I have my first Endo appointment in one week! (Which I am excited about.)
Yep yep yep. I did . Went to see my doctor 4 months before dx because of feeling weird, and she actually gave me a BS test (fasting) which was 109, and at that time considered “normal.” I now know that fasting bs is often the last to go for Type 1’s. Then another doctor drew blood a few months later and told me that my labwork was “fine.” I later found out my glucose reading was 385 (after I was diagnosed a few months later I called to confront him, and he said, “well, we weren’t sure if it was a fasting blood sugar or not” as if that is every an okay number!). Finally, about a month after that I was diagnosed but PCP assumed I was T2 because I was an adult, but felt weird about it as I had zero risk factors, and no family history, and sent me to an endo, as I requested. Finally a right diagnosis. Type 1. No one was talking about LADA yet, but to me it seems that is what I have.
So many clues, and so many professionals who could have helped me sooner!
For about 10 months, I had unexplained (and unwanted) weight loss. I kept asking my drs WHY (my primary, gyno, dentist, optometrist, hematologist/oncologist) and everyone said they didn’t know. It was almost like they were congratulating me, like they wanted to know my “secret”. “Keep working out” or “you must be working out more than you think”? What? Would a man have been treated like this? They didn’t understand why I was complaining about weight loss! They were only thinking that it may be lymphoma, since I had been misdiagnosed with that a year prior. My unexplained weight loss concerned me so much, I bought a scale for the first time in my life! My pants were no longer fitting, people at work kept asking about my weight loss, and I just KNEW it was something very serious. I would even eat extra calories or junk food and get on the scale, only to see the numbers keep going down. And the craziest thing looking back was how I started drinking soda again, because I was so tired, and I felt it would perk me up, but it never did. A friend even commented that she can’t drink Pepsi late, and I (oh so silly!) joked, “oh, I can. I can go right to sleep!” lol Little did I know, I was in a nice DEEP, probably 400 plus, sleep.
Then I got my first cavity in about 20 years, and I pressed the dentist: why? He said, sometimes, people just get them after a long time. I told him I don’t believe it, I knew it was connected to my weight loss, I just had NO idea it was diabetes. Then, at my annual eye Dr check-up, my vision had changed and got better? Once again, I asked why. I felt it was another “clue”, and awfully strange like the cavity, that my eyes would get “better”. Little did I realize that it was because my sugar was so high and effecting my vision. Each drs visit, they ran blood tests and found nothing. A few months prior to diagnosis, my bg was high (like mid 100’s) but dismissed as from eating. (this was taken hours after lunch)
Finally, the week before diagnosis, I went to my hematologist and insisted she run my blood work again, checking everything. I even suspected Celiac or some other malabsorption issue. Why am I losing weight? She ran my blood work again and called me the next week. My bg was over 400 that day. Finally! Finally, my pancreas wasn’t working the moment of the test. (felt like a car that stops making that weird noise when you finally take it in to be checked!)
She told me to go to the ER immediately. Once there, an Endo came in, looked at me and told me I have Type 1 diabetes. I pressed him and jokingly asked for Type 2, and he said, no, you definitely don’t have Type 2. But you may have what we call 1.5. Either way, it doesn’t matter because you are now insulin-dependent."
I saw two different doctor and none of them could put a name on my symptoms. They thought it was a kidney problem because of frequent polyuria. One month later, I nearly faint at home so my parent bring me to the hospital. The doctor at the emergency diagnose me in 5 minutes with evident symptoms and a BG at 40 mmol (720 mg). I’m sure that you guys with your knowledge in diabetes could do a better diagnostic than my first two doctors …
I saw the doctor at the emergency years later and he remember me, the teenager that was diagnosed at 40mmol during christmas night !!!
Could you elaborate on this point? I didn’t realize there was a “season” for T1D. But since I was Dx in May, I find this very interesting.
Oh Kas…same here. My doc told me verbatim that he not officially dx diabetes 'till my fastings were 11 (198)???
What IS that all about??
The cut off at fasting is actually 7!!
The cut off is 11 for non-fasting, and 7 for fasting.
I would basically say that I was thought to have Depression, and that they gave me more and more meds for Depression, without exploring anything else. My blood sugars were high, and no one bothered to tell me or point it out to me… I thought everything was fine, on that end. I didn’t get diagnosed appropriately until 3 years later, pretty much, after I basically couldn’t function much anymore. (last year)
The following are guidelines from Canada’s Ministry of Health (as with the Canadian Diabetes Association)
RECOMMENDATION 5: Diagnosis of Diabetes, Impaired Fasting Glucose and Impaired Glucose Tolerance
Classic symptoms of polyuria, polydipsia, and unexplained weight loss with a casual PG > 11.1 mmol/L are diagnostic. Casual means any time of day, without regard to the interval since the last meal.
In the absence of classic symptoms or metabolic decompensation, a fasting plasma glucose is recommended as the initial diagnostic test for diabetes. In the absence of classical symptoms a FPG >7.0 mmol/L is considered diagnostic, but a confirmatory test must be done on another day. Fasting means no caloric intake for at least 8 hours.
Oh, I was extremely depressed, don’t get me wrong… but the blood tests I had back then, were all pretty darn high for a fasting test… and not one person bothered to say anything at all, to me, that I was in any kind of danger… nor did they do any follow up tests. They let it go until I was basically non-functioning, blind, and with chronic yeast infections, to actually start wondering about it… (and by then it was my gynecologist who said something, not even my current doctor.) As soon as I found out I had Diabetes, and took control of it, it all went away.
I lost 30 lbs from July to September 2009 bu hadt no awareness. Drinking constantly but thought summer is hot this year. And of course drinking makes you go to the bathroom. My BGs were in the 400-500 range when I came in. With no history of diabetes, no gestational diabetes, no big babies, etc. they thought it might be Type 1 but went ahead and treated like Type 2. Metformin didn’t do anything except give me tummy cramps. 2 days later I started Lantus and Humalog. 6 weeks later they finally did the lab and switched diagnosis to Type 1.
In mid-september of 08 I gradually started having symptoms of it, they didn’t get severe until the end of December. My mom thought that I had a UTI and the flu so my dad took me to the doctor, the doctor said I had the flu and wrote me a prescription for an anti-biotic. I even told him that I lost 35 lbs. in 2 months and I hadn’t had any changes in diet or excercise. So I went home where things rapidly got worse, my mom wanted me to go to the hospital but my dad said to give my anti-biotic some time to work. Finally my dad took me to the hospital at 1 am where they did blood work, once they got it back they said that if that i needed to be rushed by ambulance to a bigger hospital with a PICU. It took a while to get there since there was a snow storm. When we got there they told my dad that if they would have waited until morning I would have passed away in my sleep.
Yeah…in other words “it’s all in your head”!!
Oh my gosh…Praise God that your parents listened to their heart and took you to the hospital when they did Taylar! xxxx