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Permalink Reply by Mike on August 24, 2011 at 9:11pm

I suffer the same fear and occasionally, no oftenly cancel a doctor appointment because I didn't/don't want to go to the lab. I psych myself out each and every time I have to go and even after it is over I end up sitting in the car with my arms tighly crossed. I think the fear comes from being a child with diabetes back in the day when blood work was required anytime someone flipped on the lights. I remember being in the hospital and having the lab techs come in every 12 hours to draw blood. The fear of having to give blood was with me even at times when I was not in the hospital and haunts me to this day.

I really wish that all endocrinologists handling pediatric cases could understand the fear that young diabetics face. I think it is an involuntary reflex for endocrinologists to hand out a lab slip at the end of an appoinment. The really ironic part is that my doctor will tell me that my Hba1c is right where it needs to be but at the same time his involuntary hand is filling out that darn lab slip. I finally got my doctor to agree that if my levels were good he would give me a pass on the next visit. A small win but I certainly celebrate it.

Sorry for the long answer but the fact is I don't like blood work or IV's either. Insulin injections are no problem at all.

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Permalink Reply by kittykat on September 20, 2011 at 7:41pm

that's hilarious!! I'm the EXACT same way :)

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Permalink Reply by Niki on August 24, 2011 at 3:45pm

My three year official type 1 diagnosis will be on November 13th of this year.

In April 2008, I went in to the doctor for a bladder infection and received a phone call that I needed to come back in for blood tests as there was sugar present in my urine. I went back and my then doctor ran a fasting blood sugar and an A1C. I received the results and my A1C was 7.2 and my fasting BG was around 200. I was told I had type 2 diabetes and to go and buy a book on it. Gasp! Not kidding. Keep in mind that I'm 5'7" and was just under 120 lbs at that time. I was pretty shocked and argued that I live a very healthy lifestyle and there was not much I could change in my diet. I admitted I could exercise more and his response was, "even 5lbs can make a difference." I was 29 at that time and a size 2. He
didn't put me on any medication and just sent me on my way.

By the following Monday morning I had an appointment with another doctor who given my healthy eating habits and weight, didn't think I had type 2, but a glucose intolerance. He admitted that would be rare at my age, but it would be best to just watch my numbers and come in monthly for tests. I pretty much starved myself until late October and somehow kept my numbers in the 200 range with my A1C's in the 7's. With the exception of salads with no dressing and the occasional vegetable, I did not eat a single carbohydrate, but I was feeling progressively worse. By that point, I was just about 100 lbs and a walking skeleton. I couldn't see to drive, my vision was so blurred. I had to quit my job in television news as I could no longer function. I was finishing my last semester in school and was planning my December wedding which at that point, I wasn't sure I was going to make as I was feeling that horrible. I was drinking constantly and urinating at least 20 times a day.

On a particular Friday afternoon, while visiting my parents, I was so ill, lethargic and out of it that they called an ambulance. I refused to go with the ambulance as I was terrified after all of these months of torture, I didn't think anyone
could help me and I didn't want to be put through a hospital visit. The paramedic told me that I needed to seek medical attention and if I wouldn't go with them, that was fine, but he insisted they follow my parents and I to my doctors office. It wasn't a smart choice on my part, but was I was so combative and miserable, no one could talk sense into me. When we arrived at my physicians office, as luck would have it, my doctor was on vacation. I was seen by another doctor, a woman, to who this day, I cannot believe is licensed to practice medicine. My sugar was over 300 and she said, "it's a shame, but there are so many people walking around with blood sugars in the 200 and 300's and most of them don't
even know it." I looked like a walking corpse. I live in Hawaii where the incidence of type 2 is very high and type 1 very low, but how could a trained medical professional not spot the symptoms. I guess the thought because I was 29, type 1 wasn't on the table. After that experience, much to the dismay of my parents and fiancé, I just went home and cried. They tried to put me in the car and take me to the ER, but I was screaming and crying and refused to go. Ridiculous behavior and totally out of character for me, but with a sugar of over 300, I was certainly not thinking clearly.

My mother had been telling me for months that I needed to see an endocrinologist, but the wait was 6 months so I couldn't get in. I was at my wits end, and by that point, I no faith at all in the medical system, as I knew I had type 1 and no one listened to me. I had done five months of research and would cry to my fiancé that I had type 1 diabetes, and could not understand why no one would believe me. I remembered reading a book by a famous local naturopathic
doctor who specializes in autoimmune diseases. I immediately called her office and begged to be seen. The wait list was well over six months, but I was in such desperate shape. I faxed over my medical records and she personally called me and agreed to see me the next day, which was Saturday.

She walked into the exam room, took one look at me, and said, "You do not have type 2 diabetes. You have autoimmune Type 1. Your body is starving to death and you need to get on insulin immediately." I credit this woman to saving my life. I finally got the confirmation that I needed. From a naturopathic doctor.

On Monday morning, I got a call from my primary care physician asking me to come in. Clearly, he received the notes from the doctor who sent me home with a blood sugar of three hundred. When I arrived at his office, he said, I suspect that it's Type 1. I said, yes, I know, a naturopath diagnosed me on Saturday. He looked a bit miffed. He ran a pancreatic function test and an antibody test. My pancreatic function levels were undetectable and I was antibody positive for type 1. I didn't even know that there was an antibody test. My pancreatic function was tested the April prior and it was low, but in five months, my numbers were undectable.

Finally the diagnosis. I was sad, but just relieved to have confirmed what I already knew. I was sent to an endocrinologist the following day and was put on insulin and finally started feeling back to normal. Not sure if anything having to do with type 1 can be called normal, but I was feeling better. I made it to my wedding. Lol. But was unable to graduate on time. I have learned with type 1, you have to forgive yourself for things. I have always been very hard on myself and this illness has taught me, I can't be. No matter how hard I try, my numbers will never be perfect. My A1c is in the 6's and I'm fine with that. I do the best that I can and my endo says I'm doing a good job. I'm not where I want to be professionally speaking. I never returned to t.v. News as I haven't been able to land a position, but I have high hopes that one day I will. Until then, it's just one day at a time.

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Permalink Reply by Emily Coles on August 24, 2011 at 4:03pm

Wow... another totally harrowing story. I think I've been really lucky with medical care, because I've never had to convince a doctor of what's ailing me! It's crazy how many folks on tudiabetes seem to have had that same problem.  I'm so glad you're doing well now (A1C in the 6s is fantastic, in my opinion)!

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Permalink Reply by Melitta on August 24, 2011 at 9:00pm

In early 1995, I had two back-to-back colds and never really recovered. I was 35 years old and a life-long athlete. I was losing weight, eating a lot, peeing a lot, and was extraordinarily fatigued. I had hideous leg cramps that kept me awake at night. I tried to make an appointment with my doctor and the earliest appointment they would give me was one month out. I kept calling to see if I could be fit in, if there was a cancellation, to no avail. Finally, my weight loss was so extreme (I was losing 3 pounds a day at that point) that a co-worker insisted I get help immediately. I went to my doctor without an appointment, and my doctor's nurse told me I had diabetes and told me about the progress in the treatment of Type 1 diabetes. When my blood test results came in, 619 mg/dl, I was told to go to the hospital immediately (in Walnut Creek, California, USA). It was there that my problems with misdiagnosis began.

After hydration, I was given IV insulin. My blood sugar came down so quickly (I am and always have been extremely insulin sensitive) that they had to give me IV glucose. I briefly went into DKA in the hospital. I was seen by an endocrinologist who was a medical school professor at University of California San Francisco. Although he said I was in the "gray area" of diabetes type, in my chart he put NIDDM (non insulin dependent diabetes mellitus, now called Type 2 diabetes), took me off of exogenous insulin, and discharged me from the hospital with a prescription for glyburide. My blood sugar was 319 mg/dl when I was discharged from the hospital. I was sent to Type 2 diabetes education classes. The nutritionist I saw at the John Muir Hospital diabetes center said that glyburide didn't usually work on someone as thin as me, but she didn't explain why not. I read everything I could about diabetes, and it was very clear that I didn't fit the description for someone with Type 2 diabetes but that I did fit the description for Type 1 diabetes. I spoke with the endocrinologist about it. The glyburide had no effect and my blood sugar was extremely high. One week after I was hospitalized, I had an appointment with my endocrinologist and angrily confronted him and told him I believed I had been misdiagnosed. After some heated discussion, he agreed that in fact I did have Type 1 diabetes and he prescribed insulin therapy. I later confronted the CDE and nutritionist that I had seen during the week of misdiagnosis, and they basically said they knew I had Type 1 diabetes but wouldn't disagree with the endocrinologist. I was upset that I had not been given appropriate treatment but thankful that it was only one week that I was misdiagnosed. Now, 16 years later, I have adapted to life with diabetes, but I am still working to get acknowledgement from the medical community about the prevalence of adult-onst Type 1 diabetes and the need for correct care. Here on TuD, I blog about misdiagnosis, for example Manifesto for the Misdiagnosed.

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Permalink Reply by nel on August 24, 2011 at 9:32pm

This has nothing to do with diabetes, but it has to do with drawing blood : I started to donate my pint of blood to the Red Cross , when I think I was 18 years of age , in the Netherlands ...did this 36 times( until diagnosed ) ..the idea /pain / etc./ etc. never bothered me ...and I am the one , who has a very low pain threshold ...ask my Hubby .

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Permalink Reply by MelissaM on September 2, 2011 at 5:04pm

I was 4, I remember being carried into the ER and feeling so sick. I also remember as one of my parents were signing me in I walked over to a hallway leaned against a wall and sat down, I promptly vomited. I also remember being in a hospital bed with that cardboard thing taped to my arm to keep my hand straight for the IV. I remember being in a room while my parents learned how to give a shot to an Orange. I don't remember a whole lot except for bits and pieces.

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Permalink Reply by srfitzger on September 6, 2011 at 11:56am

I was 22 in my last semester of college at Purdue. I worked out at least 4-5 times a week best shape of my life about 6'0 185. One day I started having to go to the bathroom alot, and extremely thirsty all the time especially at night at least 2-3 times middle of the night during days of non-drinking :-). I used the internet and technology tools extensively for research. After about two weeks of the same symptoms I started looking up what I might have and diabetes came up was one of the top choices along with cancer and some other things. Granted during my times of really bad thirst I would drink mountain dew or something similar not water which I'm sure hurt the problem. I went to the doctor for some blood tests and I'll never forget the phone call that next day.

It was fall break me and the girlfriend, now wife, were driving to gatlinburg for 3 or 4 days, the cheap college getaway! On the way out of town I get the results and they tell me my blood sugar was 450, with an A1C of about 7 stunned at first I said I was leaving for vacation could this wait? They said you can die if you don't' go to a hospital right now. The wife and I have only been together for a few short months when this happened and I broke down in tears, probably the most valunable she has seen me in our relationship. Not knowing about the disease at the time all I could focus on was death and how I'm going to die. I did an overnight at the hospital where they got my bloodsugar under control and released me the next day without a diagnosis i.e Type 1 or Type 2. They gave me some oral meds and a blood sugar meter and sent me on my way.

Over the next few months the doctor would prescribe me glyberide because he thought I was type 2, he did not do a c-pep test or anything he was a gen doc. After about 8 months of this I learned a friend of a friend had diabetes and told me to go to an Endo, I did and she finally found out I was type 1 per c-pep test. I was still honeymooning at this point and she was surprised how long I lasted I believe my A1C was 6.8 when I saw her on oral meds alone.

**Side note** I am still pissed about this to this day. What if they found out I was type 1 to begin with and not give me meds to force my pancreas to make more insulin that would just get destroyed. I could still be producing something today but I still get so pissed off about this daily that for almost a year I was type 2"

She then told me I need to take insulin which again with ignorance thought it meant something way worse then it was. I finally got on shots and was hovering around the 6.5 range for about 2 years when I found a new endo who got me on a pump, which put me in the low 6's. A year after that I found this community and the dexcom! Since getting the dexcom at last Christmas I have not had an A1C over 6, my lowest being 5.0 as of recently with minimal lows. Until recently the diabetes depression kicks in when you don't care anymore because you are fed up, but that usually goes away in a week and I get my ass back in shape.

With Dr Frauntmans research and the technology we have today I'm a bit more confident I won't being having a young death but still everyday its on my mind all the time. I am grateful that my type 1 didn't start until the end of college and not T the begging or even as a kid, and I commend those who have had it their entire lives.


Ross

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Permalink Reply by kittykat on September 19, 2011 at 6:10pm

I was 12. Weighed 65 pounds and couldn't hold my bladder more than a half an hour. It was winter, and I remember my mom kicking us out of the cottage to play, and all I would do was eat snow. I tried to tell my mom I was peeing A LOT, but she was one of those moms that there was "nothing tylenol couldn't fix". We were celebrating New Years out @ my cottage and I felt myself getting sick. My mom thought I had the flu. She was feeding me 2 litres of regular seven-up one after the other. Eventually I ended up in bed. SO hot under the covers, SO cold out. I couldn't stand. I remember my aunt came into the bedroom and asked me to stop starving myself, I looked at her like she was crazy! The last thing I remember was my dad carrying me out of the cottage because I couldn't walk. Apparantly I was talking in the truck, I don't remember. My mom brought me home, (STILL didn't think there was too much wrong with me) and called my doctor. They told her to get me straight to the emergency room @ childrens. They told my parents I would die, I was too far gone, and if I survived I would have massive brain damage, as I was so dehydrated. They could only give me icechips every so often so my brain wouldn't swell too quickly. I was SO THIRSTY!! I was in a coma for 4 days, entry level bloodsugars were 108!! (canadian levels.....the normals are between 4 and 8). I don't remember much of the hospital, just that my dad's work sent in a HUGE bag of jellybeans lol. I gave them to my brothers. The nurse asked me what I thought I had, and we had just been learning about aids in school, so to learn it was JUST diabetes, I was actually really relieved lol. Was home within a week, no lasting side effects from the massive dehydration/ketoacidosis.
OH! and I too had the MASSIVE leg cramps keeping me up all night!

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Permalink Reply by karineh on September 20, 2011 at 5:23pm

I was 18 years old and my first year at a University. I first noticed my weight coming off very fast, down to a size 6, my body is meant to be between a size 8 to 10. Then came the lost of taste and appetite, I remembered feeling like I had cotton in my mouth and remembered having a hard time figuring out what I wanted to eat for lunch. What scared me the most was amount of times I had to pee, I fell asleep almost everywhere and anywhere (in class, on the bus, while studying, watching tv, reading) , and walking up the stairs got me out of breath and dizzy.

I ll never forget when I was waiting in my doctor's office waiting for the results for my urine sample, the nurse asking to speak to my doctor in the hallway and I could hear her frantic voice. I was very scared and I started to have a nervous breakdown, I had no idea what was wrong with me. The doctor told me that my sugar level is 369 and that I need to go to the hospital.

I stayed in the ICU for 3 days and 2 more days in the hospital. I am very grateful for my endocrinologist and nurses that helped me learn my new lifestyle. My endocrinologist told me that "do not look at diabetes as a disease but rather a lifestyle that everyone should follow." =) Diabetes has given me confidence, given me the tools I need to take better care of myself, and a healthy lifestyle.

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Permalink Reply by brokenpole on September 22, 2011 at 3:35pm

The year was 1988. It was a dark and stormy night.

Wait...wrong story.

I was working doing training for operators at a nuclear power plant in New Jersey. Now, I was never a slim fellow. I did play sports and loved umpiring little league baseball and softball. I have always drank a lot of water so some what frequent trips to the bathroom were not out of the ordinary.

But then I started having to go at night. Just once a night, when it first started, but it was becoming more and more frequent.

This, as you can imagine, affected how much sleep I got. Which affected how well I stayed awake at work. My office was in a cube and I had another person in there with me. First he commented about my nor being able to stay awake. No this never happened when I was in class. It always happened when I was doing paperwork. I would fall asleep and when I woke up there would be scribbles all over the paper.

My cubemate also brought up the fact that I was using the bathroom more than normal. I guess some students had mentioned my frequent breaks during class and it became an inside joke amongst my co-workers. At the time, I knew none of this of course and just blindly went about my business.

I finally got approached by my boss who told me I had to go to the doctor. Result, T2 with a BG of 630. For how long only God knows. But life has gone one. Diet and exercise gave way to oral meds which gave way to insulin therapy.

If you are a T2 on oral meds, consider switching to insulin therapy. The only real downside is the greater possibility of lows. But there are far less side effects.

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Permalink Reply by brandi on September 24, 2011 at 3:07pm

I was a 9 year old. I remember having to go to the bathroom all the time, but I didn't know why. I was always really thirsty, which made no sense to me since I've never been one to drink alot. My mom finally took me to the doctor, which then sent us to the hospital where I spent 5 days. Mom stayed with me the whole time. My friend Gabi was visiting from Florida, so she and my older brother Chad had to go stay with my cousins Kristopher, Krista, and Kody for the week. I remember there was always someone there until late at night. The hospital employees let my family stay as long as they liked. Usually mom and I would watch TV until I fell asleep after everyone left. One night my older cousin Krista and Gabi stayed the night with mom and I. It was like having a hospital sleepover :) Nobody really explained what was going on, why my fingers were being pricked, or why annoying doctors kept sticking insulin shots in the backs of my arms. My mom and dad explained it when I finally got to go home. The guys at my dads work each chipped in and sent a lady (Cassidy I believe was her name) out to get me a few things. She got me a basket with a stuffed cheetah and some other things in it. My Aunt sent a stuffed horse with a "get well soon" balloon tied to one of its hocks with colorful ribbons and a sparkly card. My moms aunt sent a card. My neighbors (only our neighbors for 5 months, we were new to the area) brought me 2 polly pocket dolls and some clothes for them. My brother brought me a bear in a robe and house slippers holding a hankie that said "get well soon" up to its nose (parents bought that of course). Thats about all I remember...

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