79....and That's Not a BS -- My Diagnosis Story

I know that my story is incredibly long, but I am putting this out there in hopes that my story will help someone. I want to encourage people to demand the best for their care and not be afraid of rocking the boat. I also hope that this helps women who have diabetes who are mothers or want to become mothers, though I don’t touch much on the subject here. Diabetes is a struggle, but diabetes and caring for a family is an even greater struggle.

I have been an official Type I diabetic for 7 years now, my father for 45 years. We were both diagnosed late in life…him at age 33 and I at age 29. You would think that with a family history of Type 1 diabetes in my father and Type 2 diabetes in my mother that when I went to my PCP for weight loss and being tired that she would have immediately ran the proper tests to check for diabetes.

My whole life I have been a small person, 5’ 3" and 98 lbs. Naturally many people thought that I had an eating disorder, which was far from the truth. I could pack it away like I hadn’t seen a meal in days. But when my weight dipped to 90 lbs, I knew that something was wrong. I was concerned that I might have diabetes. For crying out loud (as my mom always says), I was diagnosed with gestational diabetes when I was only 6 weeks pregnant with my daughter. At the time that didn’t raise any red flags, but in hindsight, such an early diagnosis probably meant that my pancreas was on its way to retirement.

Throughout my pregnancy, I controlled my blood sugars through diet. I didn’t eat ANYTHING sweet, measured everything I could and logged every morsel I ate. It was probably the best I had felt in a long time. I gained 40 pounds and almost all of it was my ginormous belly that looked like I was trying to smuggle a beach ball passed security.

I gave birth to my daughter who was 9lbs 4 oz at 37 weeks. Immediately after she was born all of the doctors told me I could resume my normal diet. To tell you the truth, it made me nervous. After 7 1/2 months of watching everything I ate, how was I then suppose to forget all about it? But after a month of continuing to watching my diet, I decided to ease my way back into my old routine.

(Fast forward to a month before my daughter first birthday.)

So, not only had I lost the baby weight, I lost much more. I began to feel very tired and my weight dipped to 90 lbs. I scheduled a visit to my doctor. She ran a series of blood work which she said included a test for diabetes because I told her about my family history and requested her to do so. The results….all normal. Normal? Blood sugar level was something like 102. Didn’t make sense to me, but I just thought that maybe since my daughter started walking and a full year of breast feeding was just taking its toll.

The next couple of months boiled down to a trip to Egypt where I got terribly sick, TWICE, continued to lose weight, got a couple of bronchial infections that had to be treated with antibiotics and was told by everyone that saw me that I looked awful. (Gee, thanks, like I wasn’t feeling bad enough.) I had blood tests to check for liver cancers because I complained of pain in that area, TB, blood cancers, the whole gamut of tests. Results…all normal, including repeated blood sugars in the 90s and low 100s.

My PCP by then was beginning to become frustrated with me. She began checking my teeth and making sure my blood work didn’t show signs of an eating disorder. Results…normal….no eating disorder. Her advice to me was to eat. Eat plates of pasta and Hagen Daz shakes with Oreos before bed. I swear, I am telling you the truth.

Before long I was experiencing tiredness, thirst, blurred vision, numbness in my lips and cheeks, tingling in my hands, frequent urination and I was a whopping 79 pounds. I was constantly researching my symptoms and the first thing that would always come up was diabetes. I just couldn’t believe that I was having normal blood sugars. If it wasn’t diabetes, what was it? Was I dying?

On my last visit before my diagnosis, my husband went with me. He insisted on going to the doctor with me so he could tell her himself that he didn’t think I was eating enough. At this point, I just wanted to get better. Maybe it was me, maybe I didn’t eat enough. I just wanted to be well so I could take care of my daughter and do all the things a stay at home mother does. I was lucky enough to find the energy to take care of her AND cook dinner.

Result….nothing. I left the doctor’s office in tears. I know I wasn’t crazy. I know something was wrong. I went back and begged her to run more tests to see if I had diabetes. All she did was read my last blood sugar, which was normal, and say that she would draw more blood and see if it changed. Before leaving the office, I went to the ladies room to splash water on my face. The person in the mirror looked like a skeleton and all I could do was cry.

I went home and called my parents. I was crying on the phone and telling them I was scared. They suggested I check my blood sugar in the morning with my old meter. All I had were very old test strips that were expired, but I didn’t think that was going to help me. The doctor had been telling me my blood sugars were normal. It NEVER crossed my mind that the doctor wasn’t running the proper tests. I didn’t think that I would get different results than what she was telling me.

The next morning I tested my blood sugar and it was 252 mg/dL! I was so happy. Most people would feel like a ton of bricks dropped on them, but I felt like a ton of bricks were removed from top of me. I immediately called and left a message for my doctor and they brought me in for a glucose tolerance test.

I fasted that night and went in for my glucose tolerance test and an A1c. Thirty minutes after drinking the orange sugar drink I felt awful and decided to wait out my time in the waiting room with my daughter, get the 1 and 2 hour blood draws and then go home after I felt a little better.

At around 9 pm at night, I get a call from the hospital where the lab work was done asking me if I was feeling ok. I said that I felt tired but way better than earlier in the day. They told me my blood sugar was 596! What the……!!! I was then instructed to drink plenty of fluids and schedule an appointment to see my doctor in the morning.

At my doctor’s office I was greeted with, “You diagnosed yourself!” and a hug. My doctor’s official diagnosis….ready….Type 2!!! I was a 79 pound Type 2 diabetic. What??? My treatment was to resume my pregnancy diet and to record my blood sugars. I was in disbelief. The whole time I was pregnant, never did I see a blood sugar that high. I immediately asked for a referral to an endocrinologist. She became very condescending and told me I had a lot of anxiety and that she could handle my treatment and an endocrinologist was not needed at this stage.

After all I went through, the amount of trust I placed in a doctor that MISSED my diabetes diagnosis and I was the one who was being unreasonable? I was fuming. I got angry…finally. Her response was to have me sit down with the nutritionist and to call her in a few days to see how things were going. But she warned me that it could take me a month to get my blood sugars to come down and I just didn’t believe that to be true.

With my insurance, I couldn’t just go and see an endocrinologist. I needed a referral and obviously wasn’t going to get one from her. Meanwhile my father made a call to his endocrinologist who said that although she hadn’t seen my chart, she knew I needed to be on insulin. I found the Naomi Berrie Diabetes Center in Manhattan and called them. The earliest appointment they had was a few months away. By then I would be able to see doctors without a referral so all I had to do was get through the next few months.

So I played my doctor’s game. I threw myself back into my pregnancy diet and called her in a few days. I pushed her to put me on medication. She put me on metformin. Eventually my lab work came back with an A1c of 10.2. Over the next two months we played around with my meds until I was on the maximum dose of metformin and also on glyburide with meals. My blood sugars were still a little on the high side. I wasn’t getting many calories because I couldn’t eat that much. My blood sugars would get into the 300s easily, but I was able to gain back 6 pounds.

The day arrived when I walked into the Naomi Berrie Diabetes Center and saw my endocrinologist for the first time. With only doing an in office A1c test and taking a family history and learning the meds I was on, my doctors first words regarding my condition were, “You are a Type 1 diabetic, not a Type 2.” It was a diagnosis that by that time I knew I was going to hear. It was such sweet relief and a scary step. I was told that I was essentially being starved for calories and she wanted me to eat as much as I wanted and that we would work my medications around what I need.

I went home that day with a stack of prescriptions for a meter, test strips, lancets, syringes, insulin, and glucagon kits, and a folder full of literature and log sheets for me to fax daily to my Diabetes Educator. I thought I would feel overwhelmed, but by this time I had been waiting for months to get the ball rolling.

So many people have said I should have sued my PCP, including medical professionals that agreed to support me, whom I will not name. I was just happy to have my life back. I didn’t want to waste another ounce on being angry or sick, but put all of my energy into being well so I can care for my family. The time that I lost with my daughter because I was ill is something I will never get back. However, I did file a formal complaint with the hospital that she worked for. They opened an investigation and told me that they would get back to me with the results. I hung up the phone thinking I would never hear from them again. To my surprise, I received a phone call from them two months later where they said that the doctor was not negligent in the first visit, but WAS negligent in all subsequent visits in the 3 months after. They said she was retrained on diagnosing diabetes.

Oddly enough I had an encounter with her years later. While I was at the hospital sitting on a bench after seeing my high-risk Ob-Gyn and seven months along, I see her coming down the hall. She looked right at me and turned her head quickly. I didn’t think that she would stop, but after she walked a few paces past me, she backed up and said my name. I looked up and said hello. She congratulated me on my pregnancy and said I looked in good health. I agreed, and for some reason told her that I was diagnosed as a Type 1 diabetic and was on an insulin pump and that my life was completely different because of it. She gave some supportive words and wished me well and was on her way again. I don’t know if what I said or did made any difference, but I am hoping that her next patients she tests properly for diabetes and refers them to an endocrinologist. The one thing that I think I NEEDED to hear from her was, “I’m sorry.” I won’t hold my breath for that one. Maybe I’ll work up the courage to write her a letter some day. Perhaps that will be a waste of my energy and time, but how do some people ever know the impact on your life if you don’t tell them the damage they caused?

what a story! I was diagnosed with type 1 last April and I too go to the Berrie Center in NY. It’s such an amazing facility! I’m glad you’re having a positive experience with them too!

I’ve seem some advice on a diabetic newsgroup that said that testing for diabetes works better if done at three separate times of the day - before eating anything in the morning, one hour after the start of a meal, and two hours after the start of a meal. Once this is done a few times, though, you should know which of these times gives the most information for you. Doctors tend to choose only one of these times for testing, if they don’t decide to use random times of the day instead.

That’s an incredible story. I similarly walked into my doctor and insisted I had diabetes, and luckily they performed the right test right away and sent me straight to the ER where I got an immediate endocrine referral. I also had to fight over the phone to get an immediate appt because an adult is usually a T2, but I did fight and when they saw me (2 hours later, yay!) it was the same as with you, T1 right away and just ran the tests to be sure. I’m so glad you kept going in and you didn’t let that awful woman kill you, she sounds terrible. Thank you for telling your story, it’s so important that people stand up for their own care.

Quite the story - I too was misdiagnosed at 37 as a 120 lb type 2 and did months of a starvation level diet before I could finally get a referral to an endo’s office - three months and twenty pounds lighter, and after I did the research and had the lab run the anti-GAD and anti-ICA tests - which were overwhelmingly positive. I think I was the first patient my endo ever had who was relieved to be told they needed insulin. I did phone my EX-primary doctor to explain that it was type 1 diabetes, not type 2, and all the “eat less and exercise more” advice in the world wasn’t going to get me healthy, and if he ever saw another patient with similar symptoms, please NOT put them through what I went through…

I agree with the others: Your story is incredible! You showed tremendous courage and perseverance – and a great deal of patience – and you should be applauded for your grace. I can certainly believe every last word you write, since I have my own story of doctors who made mistakes, missed diagnoses, put me on an inappropriate diet, forced the wrong pills on me, and caused me to lose weight. It’s not just doctors, though. After 5 months of taking metformin and never having 3 hour post meal bgs under 200, I finally got a doctor to run a c-peptide and prescribe insulin, only to run up against a wall known as a CDE, who refused to help me determine an insulin regimen. “You don’t need it!! We can’t figure out an insulin:carb ratio for you because you would have to eat at least 50 grams of carbs for every unit of insulin if these readings are right! You ought to be on Byetta and eat very low carb; it takes care of high post meal bgs and you won’t lose any weight if your body doesn’t need to lose weight!” And that last one was after I had lost nearly 10% of my starting body weight while on Metformin. She, like another PCP I had seen, was insistant I was an insulin resistant type 2 even after she saw the data and determined I’d need a 1:50 insulin to carb ratio! I, too, would love to have the doctors and CDE who treated me so badly say, “I’m sorry”, if for no other reason than to have them treat me as if I were a human being.

Go ahead and write the letter if it makes you feel better – even if you never send it. Sometimes, writing down those feelings can help you put those feelings into perspective, so it helps you and makes a permanent record of that little bit of your life experience – not a bad thing, if you ask me!

Thank you all for the supportive comments. It really means a lot. I have come to see here that so many others have suffered at the hands of doctors misdiagnosing us as LADA. Sounds to me that there is a lack of education about this topic when they are trained or they simply fell a sleep because they just figured all diabetics are the same and simple to diagnose. sigh

I think it is not only a lack of education or training that leads to problems such as the ones so many of us here have experienced; it is also the all-too-human tendency to find the easiest, fastest solution to a problem. I remember hearing a saying doctors were supposed to follow: “When you hear hooves (and you’re in Central Park), look for the horse, not a zebra.” IOW, look for the most common source of a problem, not something that is highly improbable. What’s bad on the doctor is that for you, it should have been perfectly clear you were a type 1 right from the start, given your family history and weight loss!

I hope that somewhere in this group, there is a medical professional who has read your story and who will make a committment to taking a more thoughtful approach to diagnosing and treating their patients, thanks to your story. If that helps even one person avoid the problems you experienced, then that is definitely a good that has come from your experience!

Every ounce of my heart feels for you. It’s so tough to deal with something like this during one of the most exciting times in your life, the birth of your babies. Glad to hear that you’re putting that behind you and moving on. Best of luck.

Many of us T1s who were originally diagnosed as T2, have a similar story. Diagnosed at 25, the bulk of my story happened over the last 21 years, starting with GD. I was finally antibody tested in 2009 (after 2 years of asking) and was GAD positive. That T1 diagnosis took 20 years! As awareness grows, I’m still shocked to see my story and yours repeated so often! In 2010, this just shouldn’t be happening!