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Wrong Diabetes Diagnosis.

On Monday, the Wall Street Journal (look at me, linking to a real publication instead of a Strongbad email) had an article about doctors misdiagnosing type 1 diabetes in adults.  I posted a link to the article, called "Wrong Call:  The Trouble Diagnosing Diabetes," on my Facebook page and received several comments from people who went through a similar misdiagnosis.  They have offered to share some of their story here, and I'm hopeful that their words will help someone else in a similar situation.

The Initial Symptoms.
Jessica, diagnosed at age 26, was already familiar with type 1 diabetes.  "My diagnosis story actually begins with my husband, diagnosed with type 1 on his 21st birthday.  Fortunately he was diagnosed correctly and quickly, and we were able to get him all of the help he needed."  She described hitting a wall of thirst and exhaustion that set in when her son was nine months old.  "These symptoms continued for about a week, and mostly only bothered me at night.  During the day, although I was tired, I wasn't going to the bathroom constantly or super thirsty."

Lindsay had a similar experience, just before she turned 27.  "I was just a few weeks sPinging and ponging between proper diagnoses.  hy of my 27th birthday.  I had been sick a long time with weight loss, hair loss, you name it.  I ended up with intense upper GI pain that couldn't be ignored, so my mom took me to the ER where the symptoms were investigated with an ultrasound, blood work, etc.  The doctor came back to report that I had 'viral gastritis, likely due to your increased blood glucose level, which is 277.  Now, because of your age, you'll be considered a type 2.'  Love that one, eh?? My mom and I sat stunned; my dad had JUST been diagnosed with type 2 three weeks before."

Sarah also sang the same symptoms tune:  "The morning of February 22, 2007 I woke up and with diabetes without a doubt in my mind. I had nearly every symptom there was - constant thirst, frequent urination, fatigue. I had the works and I knew it.  I had a yearly physical coming up about three weeks after this and decided to wait until then to bring it up with the doctor. I realize now that this was foolish of me and that I really should have gone in right away!"

The Wrong Diagnosis.
Sarah was heading off to Europe the day after her initial type 2 diagnosis, armed with a bottle of metformin and instructions to see a doctor immediately if she felt at all ill.  "When I returned from Europe and for nearly five months, I had appointments every other week to monitor the progress of my BG readings and to adjust medications that ranged from Metformin to Glypizide to Byetta. By the time my last appointment in July had come around, I'd lost 45 pounds, the Byetta had caused my boss to think I was going to vomit every time I ate (even though he knew the side effects only included nausea, not actual throwing up) and for me to feel even worse than I had the 3 months before I began taking it. I was done. If I had to be a T2 Diabetic on insulin, I would be. But I was done feeling sick; being sick. My doctor offered to write me a referral, in which I quickly took him up on - even providing him with the name of an endocrinologist during that very appointment.  He gave me a prescription for insulin and a low dosage to start me off until I could get in to see the new doctor."

"We were given the name of an endocrinologist, a prescription for Amaryl and a prescription for a blood glucose meter," said Lindsay, recalling her initial diagnosis and treatment.  "We were told that once my blood sugars were under control, the gastric pain would go away.  I remember so clearly the nurse making sure I knew that as a diabetic my 'days wearing open toed shoes were no longer.'  No real information on what diabetes was, no instruction on how to use the meter, no information at all.  We left and I felt totally and completely lost. I was still so sick from the upper GI pain that I was relatively accepting of my fate because I was under the impression it would get better fast."

Jessica, however, had her husband's type 1 tools at home to make a quick check:  "One day, we went to my moms for dinner ... a night I now refer to as my "Last Supper."  It was my favorite meal - pot roast, mashed potatoes, loads of gravy, corn, bread, and Pepsi.  Immediately after dinner, I was going to the bathroom every 15 minutes.  I laughed about it, was a little concerned, but rationalized that I had drank a lot of water and Pepsi that day.  My mom looked at me and said sarcastically, "You should check your blood sugar!"  And it hit me.  My husband wasn't with us that night, but my sister drove me home, and we pulled out the meter:  HI.  'Bullshit,' I thought.  Check again:  HI."  She was off the the ER and sent home with a prescription of metformin, after minimal lab work.

Tipping Point, and Resolution.
That endocrinologist appointment was a true tipping point for Sarah.  "I remember my first [insulin] injection like it was yesterday. It wasn't much, but I remember feeling better within the hour. It was the best I'd felt in months - not only physically but emotionally, too. My fatigue and over all demeanor caused a lot of emotional angst that summer.  About a week later, during our first appointment with the endocrinologist, we [my parents and I] learned that I was a type 1 diabetic. She taught us about insulin to carb ratios, how to calculate them, when to take my injections for food and when to correct a high blood glucose reading, and what the difference was between Lantus and Humolog. She told me what was happening to my body and for the first time in months I understood. I was grateful for that day."

Lindsay also found quick, but bittersweet resolution at the endo's office.  "One week after visiting the ER, I met with my new endocrinologist who would be the first to tell me 'Um, no.  The doctors at the ER were shockingly and sadly mistaken.  Your A1c was 15.3 and you are, by every definition a classic case of a type 1, soon-to-be insulin dependent diabetic.  Your lab results are more than clear in that.'  I started SOBBING.  I had just accepted my fate as a type 2 who would have to watch my diet, maybe exercise some more and take medication.  I could handle that.  But shots???  UGH - no freaking way.  Looking back on it now, I'm baffled at how it was SO important to make sure I knew I shouldn't ever get pedicures or wear sandals again, but the meter?  The safe blood glucose ranges?  Ways to treat highs & lows?  Nah.  That wasn't important, I guess."

"I went to an endocrinologist.  I was begging for answers, telling her my story and asked if she thought I would ever be able to stop taking insulin," said Jessica, talking about her first visit to an endo. "She said, 'You know that you have Type 1, right?'  I cried, but more from relief that I finally had an answer.  My latest results had also revealed a hyperthyroid problem and she began to treat me for both.  I understand that I was extremely overweight and that's a red flag for a T2 diagnosis.  But it is terrifying to think about what would have happened to me had my husband not had a stockpile of insulin, test strips and needles for me to use.  We trust our doctors - and when we are diagnosed we do what they tell us to because we are scared, they know more than us at that point, and we want to feel better."

I only know what I know:  diagnosed as a kid with type 1 diabetes, never going through the pain and heartache of a misdiagnosis.  But after reading the WSJ article, and the stories from these women here, it breaks my heart to think of someone dealing with diabetes, but not finding answers, or relief.  All three women were misdiagnosed with type 2 diabetes and given oral medication, when they actually had type 1 diabetes, and needed insulin.

Jessica sums it up for me with this:  "I knew of only one girl with T1 when I was growing up.  I've met a few more as an adult.  What scares the hell out of me is the number of adult T1's I've met who are diagnosed in adulthood.  It's obviously a real and growing problem, and while our healthcare professionals are trained to see the signs in childhood, they aren't seeing it in adults."

Comments

I have a good friend who was diagnosed with T1 at age 56. They initially diagnosed her as T2, but the meds didn't work. She finally got fed up and asked for a referral to an endo. They quickly diagnosed her as T2. I taught her about T1. In turn, she was the one who suggested that I start pumping and helped me through that! It would be interesting to see the statistics of how many people are actually misdiagnosed as T2 first...

The type 1 in me says "Check their antibodies for goodness sake!".
The nurse in me says "if it looks like a horse, and sounds like a horse, don't call it a zebra".

my best friend was also misdiagnosed as an adult.. because she was 27 at the time, and admittedly had a sweet tooth (though she had a healthy weight), they diagnosed her T2. she lost 30 lbs in one month, had hair falling out, felt like she had the flu all the time, massive vomiting. but the time she was properly diagnosed.. in the ER, in DKA, she was so sick, so weak. i'm so sad she had to go through all of that. my son was diagnosed T1 six months later.

I can't help thinking....this "virus" they think is some random thing that happens to confuse your immune system and is the spark that brings on Type 1....could it be a literal specific "I cause Type 1 diabetes virus"? And be "catching" ? Type 1 just seems SO prevalent now, among kids as well as adults. People like me get it with NO family history...but my first boyfriend's family was riddled with Type 1 - his older brother got it at age 9, his grandfather had it, etc. I was obviously in intimate contact with my boyfriend for several years, then I get Type 1 at age 21. He then was diagnosed with Type 1 at age 30. Now his daughter was diagnosed at age 7. It's creepy weird.

I didn't realize that hair loss was a symptom of type 1. Does anyone know if that makes Type 1 patients more like to experience more hair falling out with high sugar or just in general???

Very similar story for me also. Seven years ago when I was 48 I had all the symptom, thirst, blurry vision, tired and sleep, excessive urination, and a 30 lb weight loss but I was eating everything in sight. I went to my dr who said I had diabetes and sent me to an Endo. The Endo didn't do any blood work or test. Because of my age he said it was type 2 and sent me home with a meter and metformin. For two weeks I felt horrible my bg stayed in the 300-400 range.
My primary dr called to check on me and tell me the results on the a1c on the day I saw him it was 14.1 he wanted to see how I was adjusting. When I told him what the Endo had put me on he was furious because he said it was obvious I had type 1 or LADA

Whoops, my message cut off, here is the end of my post

After I got the correct diagnosis I ending up with a pump and a DEXCOM and a brand new Endo that knows what he is doing!!

The problem, to me, is not only is this the story of a few people with type 1 wrongly diagnosed as type 2 - it is the very typical story of the poor treatment of type 2 diabetes. Far too often there is little or no information given to a newly diagnosed type 2, often no blood sugar monitoring, no diabetic education or referral to a CDE and almost certainly no referral to an endo. All diagnoses of diabetes ought to be taken seriously. Yes, they really ought to be sure whether it's type 1 or 2 but also, if it is type 2 there are options such as using insulin to get those scary high blood sugars down fast. I had to fight to get information on my own and plead for a referral to a CDE and nutritionist. A few months later when my dad was diagnosed, he was told to "take these pills and don't eat white bread" - he wasn't even given a glucometer. I don't know, perhaps it's fair for a primary care physician to assume an adult with diabetic symptoms is type 2 - but even if that assumption is correct, there needs to be a much higher standard of care for the newly diagnosed.

Son is a T1, diagnosed at age 7. Didn't present as T1 kids usually do, so our pediatrician thought he probably had meningitis. Pediatrician called ER doc to tell her we were on our way via ambulance. ER doc had recently had 3 kids present with T1 in a similar fashion, so she said, "Do me a favor; check a sugar." 481 mg/dL + admission pH of 6.91, positive antibodies. Diagnosis: T1 in DKA

Here is my diagnosis story http://albertadiabeticgirl.blogspot.ca/2012/05/diagnosis.html

I went undiagnosed for some time and suffered as a result. Thanks for this post, it was great!

Kerri, thanks for bringing us these stories. Mine is similar: diagnosed at 28, by the 3rd doctor I had seen in a little under two months. Many of the same symptoms: thirst, weight loss, fatigue. That was 21 years ago. I know I was out of the norm for type 1 then, but you'd think the protocol for diagnosis would change at least somewhat after all these years. Thanks

I was lucky. Though I was misdiagnosed, I had a LOOONG honeymoon period before I actually needed mealtime insulin (about 2 years). And I had SOME knowledge of diabetes (my brother had developed T1 at 12). I was still blindsided by the second realization, because no one told me I could be T1 and use oral meds for a while.

Something strange IS going on that more and more people are developing T1 later in life. I was at a sports and diabetes monthly meeting and the speaker asked for hands about what decade we were diagnosed. She got up to the fifth decade and was about to stop when I and the lady I'd just met said, "keep going" because I'd heard when she was diagnosed with T1: 68!

I think that so often LADA (Latent Autoimmunie Diabetes in Adults) (or sometimes type 1.5) is misdiagnosed!!

My father was diagnosed when he was 29, and I was diagnosed at 26 - but Type 1, but it wasn't until adulthood. Thank God for a good endocronologist that actually ran the bloodwork instead of just looking at my numbers and telling me I was "pre-diabetes" or "type 2"

This is so scary to me on so many levels. I hear so many folks with T2 saying that no matter what they do they aren't able to get their bg under control. I always wonder if they've been misdiagnosed. It upsets me that people are being sent home with ridiculously high bg readings and told nothing about what to do about it, when in reality they might need insulin.

The other thing that is so scary to me is that too many people with T2 are given NO information. The fact that they don't require insulin means that their condition is minimized to a dangerous point. Lindsay's experience says it all, when they thought she had T2 it was "you can never wear sandals again" with no instructions on how to even use the meter! But when her dx was changed (thank goodness) she finally received some help. Scary and so wrong.

Thanks for this eye-opening post.

Count us among the lucky who received the correct dx; my husband was correctly diagnosed as a T1 as an adult. But this story, along with yesterday's news that Dr. Faustman's TB drug testing shows promise for treating T1s but she can't get funding for the necessary human studies because the drug is widely available, cheap, and generic so there is no money in developing it, and it's a one-two punch of news for T1s. Also, holy run-on sentence, sorry!

I can't remember if links are a no-no here, so I'll just note that the piece was on Bloomberg News yesterday.

Any one of these stories could have been written by me! I was diagnosed as a T1 at 31. A year before, I was diagnosed as Type 2. My mom has Type 2. So there’s that genetic connection that lead them to believe because my mom had T2, so would I. But after eating almost no carbs and exercising every day for 2 hours for a couple months I couldn’t keep my BS in control. On to Metformin. That worked for about a couple months. Then it didn’t. On to Glipizide. Worked for a couple months. Then I constantly saw 300s, lost 45lbs and constantly sick to my stomach. I was at my wits end. The worst part is I was seeing an endo for my Type 2. Finally, he said he believed I was a T1 and put me on insulin. He did the blood work. Sure enough, it all came back as T1. I didn’t care what I had as long as I felt better. And I did. The day after I started insulin, I realized exactly HOW bad I had felt.
Thanks for bringing this article to light. It makes me feel good to know that I’m not the only one who went through this.

I feel like you've found a whole new group within the DOC. Thanks for putting real faces and stories to the WSJ article Kerri!

Thanks god my endo knew what he was doing. I had seen him for the past 10 years for thyroid issues. But when my blood sugar showed up at almost 500 he couldn't believe it. First thing he checked was antibodies. Age 41 confirmed diagnosis of T1...we were all shocked. Even though I have a neice with T1 and knew all the symptoms I came up with every excuse in the book to go along with my very obvious symptoms(exhausted, weight loss, running to the bathroom a lot, and thirsty). In the end I've accepted it and diabetes fits perfectly in with my life thanks to the pump :)

My own story is a bit different. People keep commenting that I was misdiagnosed and I am quick to correct them.

I became labelled an insulin dependant type 1.5 or LADA in June of 2012, but don't consider my Type 2 diagnosis at the age of 30 in Aug 2011 a "misdiagnosis".

Diabetes is a progressive disease. Oral meds and diet and exercise did work for me for about 4-5 months during the 'honeymoon' phase.

My doctors treated my symtoms.
We switched to oral meds and basal insulin for a bit, and now have moved on to basal/bolus. Antibodies testing did confirm autoimmune diabetes, but really that didn't change anything for me.

I did have uncontrolled high blood sugar and subsequently lost about 10 lbs in 2 weeks right before the switch to insulin. But my endo saw me immediately and rectified the situation.

Interesting. I just had a conversation with my endo about this as my dad was recently diagnosed as a Type 2 and has now started taking insulin. He was given the same instructions as many others - "don't eat white bread and take this medication." Was not even told to check his blood sugar. He finally got a meter and had to ask me how to use it. Why wasn't the doctor showing him or sending him to a CDE and referring him to an endo? He won't listen to me, of course - never mind that I've had Type 1 for 23 years! It's frustrating that the Type 2 care is often so poor. I also keep wondering if he does have the Type 1 antibodies and that's what was passed on to me - we originally thought no one in our family line had diabetes.

I guess I am lucky that my primary care physician took the time to order the C Peptide test. I was just diagnosed 3 months ago at 28 (my A1C was over 14 and my fasting BG was 396), and my doctor was great about getting me a referral to the endo and in to see the nutritionist. My health care plan also contacted me about disease managment (they call people with chronic diseases and you can speak to a nurse and ask him/her questions, etc.)

I'm pretty surprised and the lack of basic information given to these people (not only that they were misdiagnosed, but the poor care they received at the hands of "professionals"). With all the talk of obesity and diabetes as a growing concern in this country, you'd think doctors would definitely have tried to read up on and understand the disease better.

I always recommend to people I know -- if you get any type of D dx, see an endo asap, just in case. The majority of docs just don't get it. ):

My daughter recently went to a week long overnight camp in Texas for T1 kids. One of her Med Staff- a 60 year old woman- had this ( told she was T2 but really was T1) happen to her this past year. She was misdiagnosed for months before her doctor noticed their mistake. My dad's doctor diagnosed him with T2 a few years ago, BUT did not tell him for 6 months. When the results came back, he did not bother to call my dad with them. He found out at his next appointment.

This is totally my story as well!! I was diagnosed in the emergency room as T2, even though I presented with an A1c of 12 and every possible symptom in the book. I'm also an athlete and eat a very clean diet. My endo figured out very quickly that I'm actually T1, but I'm still so angry with the emergency room personell. Mostly because they insinuated that I ate too much sugar and that if I was T1, my "breath would smell sweet." Really? That's how t1 is diagnosed these days? The whole thing was infuriating. I left the emergency room with a bottle of metformin and NO education. No meter, no nothing. I went on to eat lunch and my blood sugar soared to over 500. The whole experience made me so angry for a whole host of reasons, including the fact they tried to shame me for the diet they assumed I had. NO person with diabetes should ever be told what I was told that day, especially not one that had just been diagnosed. The lack of compassion was astounding.

My story is similar, but took a lot longer. From my diagnosis of Type 2 two days before my 29th birthday, until my confirmed Type 1 diagnosis, it was 2 months shy of 6 years (yes years). After losing 50lbs in about 2 months, I made an appt with my regular CFNP. I had an A1C of 11.2 and a morning bg of 511. She called in a scrip of Metformin for me and said to eat no more than 45-60carbs per meal, and gave me a small booklet on how to count carbs. After about 6-9 months of my levels still not coming down, I was happy if it was below 300, my CFNP put me on Lantus as well. That helped... a little. After 2 years of busting my butt, I was done with her when I called in one time and said that something had to give because no matter what I did I could rarely get below 200. She told me, "You just have to watch what you eat better." New doctor did put me on Humalog as well, but didn't correct the diagnosis, even though I asked what was the possibility of me being misdiagnosed. He said that the group (one MAJOR downfall of all doctors in an area working for one organization) didn't like to second guess each other, and that he had never heard of Type 1 being misdiagnosed as Type 2. I stayed with him for nearly 4 years, because I did finally see improvement with the addition of Humalog. But when I asked for a pump he said he didn't know enough about them to help me and referred me to the Diabetes clinic to meet with an endo. The endo actually practiced out of state and came up once a month. When I first saw him, he asked me a couple questions, looked at my records and said, "They told you you were type 2? Well, they were WRONG." My insurance required a diagnosis of Type 1 to approve a pump. Lab work was ordered, and results came back confirming Type 1. Many would ask me why did I wait and deal with it for so long. I can only say, that when things work a little you hope that if you are better they will begin to work better. The feeling of failure, I admit, was the worst of it all. The relief of being told.. 'You were right', was overwhelming. I'm not an emotional person, but I did cry that day. I just feel truly blessed, and protected, that over that time period there no complications, no DKA, no ER visits, etc.

My husband Bob nearly had a similar experience (we are Brits so this was in London, where we were living at the time). He was diagnosed aged 31. He had flu, followed shortly by the usual diabetes symptoms. He left it for 2 weeks, thinking it was post-viral syndrome - we knew nothing about diabetes at the time. I dragged him to the hospital when he had lost about 20kg and could literally barely stand up any longer; when we got there, the nurses immediately tested his urine and BG, and he showed extremely high readings. The elderly doctor, obviously trained in the 1960s or something, gave us a long lecture on healthy eating, too much MacDonalds food, binge-drinking, no exercise, sedentary lifestyle, obesity, etc. and diagnosed early-onset type 2. He then (thankfully) ordered an HBA1C test. That came back at 5 or 6 or something - too low for a type 2 diagnosis, we were told. The doctor looked very sheepish and asked if Bob had recently been ill. Yes, I said - he had flu. The diagnosis was very quickly changed to type 1 and Bob was given insulin. Within 10 minutes he was sitting up and within 30 minutes he was eating a cheese sandwich and cheerfully asking if he could still have his stag night (we were about to get married in a couple of months). It was the HBA1C that saved him from a wrong diagnosis, as far as I can tell.

The WSJ story was fascinating to me, but these stories and comments are even more so!

It seems so simple to diagnose T1. Is the antibody test really expensive?

AND WHAT IS IT WITH THE SHOES???

Jessica said,"It's obviously a real and growing problem, and while our healthcare professionals are trained to see the signs in childhood, they aren't seeing it in adults." Unfortunately they don't diagnosis it so well in children either. I know of lots of cases of missing the mark for kids too. Although I also agree with a previous comment, the lack of education out there about type 2 and how to live with it is truly pathetic. When my daughter was first diagnosed T1, I didn't want to hear about T2 at all but now I feel really angry at the lack of knowledge (including the people who should know better, like medical professionals)about how to effectively live with T2. The lack of training that T2 folks get blows my mind!!

I share a similar story, misdiagnosed as Type 2 at age 27. No need to go into detail because it's pretty much the same story. In part, I am comforted to know that others can sympathize with me, but another part of me is a bit freaked out that there are so many others like me.

In response to Katy's comment, apparently the GAD antibody test IS really expensive. My endo is keeping me on a T2 diagnosis even though he thinks its not true because the test is so expensive.

Similar story. I have a T2 diagnosis on paper, but I am IA2 antibody positive. Currently pumping and Dexcom and without fight from my awesome insurance company. Because of this I have not fought to have my endo change my diagnosis on paper when in reality I am probably a LADA. I figured I am getting the proper treatment regardless.

I was misdiagnosed too (http://momentsofwonderful.com/diagnosis-story/). Sometimes I wonder why I never got online to research what was going on (since I spend so much time there now) but I trusted that the doctors knew what they were talking about.

It's posts like this that make me wonder if I might have diabetes, after all.

In March of 2009, about three weeks before my mother died, my brand-new endocrinologist (who I was seeing for a thyroid issue) diagnosed me with reactive hypoglycemia. I knew the symptoms well because my father had it, and I'd known I had it for a few years, despite the lack of a diagnosis from my first endocrinologist.

I had the occasional low, lots of migraines, and no highs for about eight months. It took that long for me to get my blood sugar and eating habits under control enough to avoid the migraines. But then I started to get highs, always about a week before my period (sorry to all the men out there).

My endocrinologist assured me that it was just hormones and it was okay. I called him several times about this problem and we spoke about it at every appointment, but my diagnosis was never changed and my treatment of "diet, exercise, and lots of water" didn't change, either.

During the time I filled out college applications, I had stubborn low blood sugars that wouldn't go away for hours, sometimes more. It was labeled as stress and I got Precose until it stopped.

I think it was my first year of college that I started paying more attention. That was the year I moved from testing roughly 5 times a day to ten or more. That was the year I realized I don't feel low blood sugars, and the migraines are from when my body brings it back up. That was the year I saw my first 180, which scared the absolute hell out of me.

Last year, my sophomore year in college, everything went to hell. There were days/weeks when I was scared to look at a carb, lest my blood sugar rise. I was waking up in the 90's as opposed to the 70's (not bad, I know, but different than what I expected it to be), I stopped seeing low blood sugars, I stopped having rebound lows after I was high. The day I hit 208 2 hours after whole wheat pizza was the day I had enough. I was put on Januvia until I stopped taking the inhaled steroids I'd been prescribed for my "asthma" (which turned out to be a misdiagnosis). Then everything went back to normal for a couple of months.

I can identify foods (not necessarily high in carbs) that annoy my blood sugar and send it skyrocketing. Maybe it's because I'm not in school or maybe because something has really changed, but I have seen three lows in the past three months, none below 60.

Every time I bring up the fact that highs aren't a symptom of reactive hypoglycemia, my endocrinologist (who I love despite everything) brushes it off and says I'm an individual. He tested me for the antibodies at my request last summer, my A1c is always in the low 5's, but I can't help but feel that there's something I should know. Something doesn't sound right, but I don't know what to do. What COULD they diagnose me with, after all? Not Type 2, but surely not Type 1 or LADA, either. I want to be an endocrinologist and have done plenty of research about diabetes, but nothing I've ever seen follows this kind of pattern. Am I misdiagnosed? Maybe. Maybe not. But this article gives me the strength to INSIST on an answer, a real answer, from my endocrinologist the next time I see him.

These stories are making me feel so lucky that I was 18 at diagnosis. In the ER I had a nurse make the offhand comment that I "just slipped in under the wire for ajuvenile diabetes" diagnosis. So if I had been 19 he would have assumed Type 2 despite my BG at 750+, obvious DKA, etc.? Or maybe if I was 19 I would have magically been Type 2 instead of 1. ;) So strange, the emphasis on age at diagnosis instead of actual symptoms, C-peptide levels. I wonder who writes the diabetes curriculum for med school; something is off there.

Thanks for this message, Kerri!! I have read about type 1 diabetics being diagnosed when they were in their 80s. It is not so unusual. Organ failure can occur at any age, due to so many reasons. A pancreas can stop producing insulin irregardless of the age involved. So why would doctors think it would happen only with the young?

I am a T1D who works in an endo's office. This is shockingly common, we see someone like this almost every week. So common, we get a c-peptide on anyone who just doesn't "sound right"

I was mis-diagnosed as Type 2 at age 56, and spent the following 3 months trying every oral diabetes medicine there was on the market in 2003.

I begged my GP for a referral to an Endocrinologist and he laughed in my face sarcastically saying "An Endo isn't going to tell you anything I can't tell you."

Fortunately I realized I needed help because of my weight loss, constant thirst and continual trips to the bathroom. When I finally found an Endo who did the proper tests and then told me I was Type 1, I was actually relieved to be taking insulin.

Thank You so much for bringing attention to this problem. My original GP is sadly still practicing medicine in the state of Wisconsin now.

I've heard this story many times, and each time is equally terrifying. The repetition of the story doesn't make it any easier to hear; on the contrary, it proves that, when it comes to the healthcare system, SOMETHING'S WRONG1

Two things really stand out in this account, though: First, Jessica's statement that "we trust our doctors...because we are scared, and they know more than us". Its a real shame that, at our most vulnerable, we need to trust these medical professionals who don't do their due dilligence in making a diagnosis. Second, one of the above comments which laments the treatment of Type 2's who are CORRECTLY diagnosed. The instructions are vague and incomplete, then they're kicked to the curb ready to fend for themselves.

It's just so sad...

Excellent post, Kerri! Type I is all over my family. When I was surprised to learn, about 10 years ago, that my aunt had been diagnosed with Type I at age 75, my endocrinologist told me it can be diagnosed at any age at all. Fortunately, she knows her stuff, but it is obvious many doctors don't. I'm glad a big newspaper like the WSJ covered this issue, since it is so widely read. Also, for anyone who doesn't know ballerina Zippora Karz's misdiagnosis story, get her book, entitled "Sugarless Plum."

My story is so similar to these, dx by Gyno and referred to pcp. .. he was more ignorant of D than me. He treated me like I was 80 years old and just needed to "make it" a few more years...I was 24, he told me no strenuos activities, gave me some complicated diet I couldn't follow, a rx for metformin, and told me not to get pregnant. 6 months later I demanded a referral to an endo who knew what he was doing. PCP said he was insulted. I'm sorry about his feelings, but my health is more important. 15 years later my a1c is usually 6 or less and I have two beautiful, healthy kids. Thank god I didn't stick around so the pcp could make the situation worse. There needs to be more education on T1 and docs need to realize that not every person who has constant thirst and frequent urination has T2 "diabeetus" like Mr. Wilford Brumlee.

I was misdiagnosed as a Type 2 when I was 21 years old. I had lost 12 pounds (NOT trying to - was rail think to begin with) prior to the Type 2 diagnosis, my mouth was so dry my tongue would stick to the roof of my mouth without a refreshing drink of soda (oops), I was peeing every 22 minutes (if I tried really hard to hold it), and my blood sugar was 336 when checked by the doctor. But nope, I was put on Metformin. Started insulin a few months later. Ironically, I was diagnosed on Halloween, the holiday of sugary candy. :)

Thank you for sharing this -- when I had onset, the PA in the emergency room told us that it had to be Type 2 because "people in their 20's don't get Type 1." My mother was diagnosed at age 36. They sent me home that same night with no instructions, no medication, just orders to see my primary care physician in the morning. Even the PCP didn't want to believe that I had Type 1 -- it took a week of Metformin and still no results, not to mention a lot of begging, for them to agree to prescribe me the insulin that I obviously so desperately needed. One pivotal moment was when my endo called to discuss my very first lab results, and said, "Your antibodies are really high. I don't know what that PA was talking about; there is not doubt that you are a Type 1. Good for you that you trusted your instincts and kept pushing," I still have that results sheet. I keep it with the paperwork detailing my diagnosis. And like Sarah described in her personal experience, that first shot of Lantus was like a huge sigh -- I felt amazing, more alive, more like myself.

I think the problem with this trend of misdiagnosis is because it seems as though adult cases of Type 1 manifest in a slower, more pervasive fashion than juvenile cases. Just as there isn't a lot of information out there for newly diagnosed adults, I don't think the medical community is taking adult cases as seriously as they should be. It's almost as though they are looking at them as isolated incidents and, judging simply by the amount of comments on this post, that is clearly not the case. Yet another reason why it's wonderful to have something like the DOC at our disposal -- no one can give light to our experiences better than we can. Thanks again for keeping the discussion going! :)

I just wanted to say it's not just adults who are misdiagnosed. My son was 2 at diagnosis. It took two months to get the diagnosis of type 1 diabetes. By that time his blood sugar was over 1000 and the doctor that diagnosed him told me later she thought we were going to lose him. His medical records during that time even list an asthma diagnosis even though he was never treated for asthma and never had breathing problems.
I didn't understand until years later how rare type 1 actually is.

This story is a mirror of my story! I was misdiagnosed, and quite honestly, I don't remember much of the month and a half between the first (incorrect) diagnosis of T2 at the ER to the correct diagnosis of T1 at the Diabetes Clinic. I was in the 500s. I was 30, and I think I'm still slightly in shock about it all. I'm working on a blog post for my blog about my experience, but it's great to hear other people's stories, although I'm sick for anyone who has to deal with diabetes.

My story is this: Mom took me to the doc in fifth grade, thinking I was T1 as I had all the symptoms. As she and my dad worked minimum wage jobs, and had no insurance, this was a big deal. My BG was over 300, but the doc decided I was lying about not having breakfast, as I seemed confused. lots of health issues and 30 years later, diagnosed as T1 after going to the ER in at total ketone breakdown. Gotta love the US health system!

Wow, I'm just "mildly" misdiagnosed... At 19, in October, for a general medical test at my doctor's he found a high sugar count in my urine sample. He suspected type 1 and sent me of to an endo for proper assesment (I was thin, underweight but very active so I blamed that, peed an awful lot, but also drank a lot of beer at the time). Anyway, endo diagnosed me as type 2 based on age... diet (no white bread etc.), strange enough two weeks later I presented with an even higher BS, ok, we'll put you on a tablet (whatever was hip at that time) and come back in the new year. Woopsy daisy, in January I presented with unmeasurable BS. And was put on one shot of long acting. I think it took about two more unneccesary glucosesyrup sucking (or did the glucosesyrup suck?) tests for the endo to admit I was type 1 and put me on a mix and insulatard, I changed hospitals shortly afterwards and went on to MDI rapidly after doing a lot of online research (on usenet, back in the days...)

Thanks Kerri (and thanks Richard for putting this to my attention!) - I guess I'm not the only alien... ;-)

I am also one of the misdiagnosed. One of the interesting things about the WSJ article was the comments, including a comment from Kelly Rawlings, editor of ADA's Diabetes Forecast. She complains in her comment that about 15% of Type 2s are not overweight/obese, so Type 2 should not be labeled a disease of obesity. What Rawlings completely fails to realize is that the WSJ article is about MISDIAGNOSIS, and those 15% "thin Type 2s" are most likely misdiagnosed Type 1s. Until organizations like ADA recognize the crisis of misdiagnosis, and recognize the magnitude of adult-onset Type 1, we will continue to have the tragedy of misdiagnosis.

I was diagnosed July 2012 as T2, at age 26 and about 30 lbs overweight. I pushed my doctor for an endo referral, which I got (reluctantly). Endo also thought T2 until I pushed for definitive bloodwork. Of course it came back with skyhigh antibodies across the board, and a barely-there c-peptide. I was fortunate enough to receive my correct T1 diagnosis in September 2012 and am now anxiously awaiting the arrival of my insulin pump! It is scary to think that when we put all of our trust in healthcare professionals, that things can go so wrong. I get upset when my BG goes above 180, and I can't imagine going another week, month with out of control sugars. In this day and age, being a savvy consumer is key - and that includes consuming healthcare.

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