Seeking stories of misdiagnosis

Glad that some good comes from my story. :slight_smile: Will be waiting to hear yours. (btw…“carby ones” is funny!)

WOW…that is pretty terrible. DO they have an estimated time when you will get your test results… and do they have a reason WHY the test results aren’t back yet???

It would be nice to have a conclusive test for autoimmunity, but even having all four antibody tests is not absolutely certain. I had a c-peptide, it came in at 1.8 ng/dL with a blood sugar of 133 mg/dl. So low normal, but according to my endo it did no mean anything. I got another one with my GAD.

In the US, although you have a right to order your own tests, it does not mean that companies won’t have their own policies to deny you access. My local labcorp refuses to accept orders unless requested by a doctor and they have refused to release the result of my own tests to me. Talk about stupid rules.

My doc and my endo said “they” don’t like to do it because it’s expensive and it’s not even done in my province (it had to be sent to Quebec). They said it takes 3 months minimum.

Again, and another reason why I’m doing this, it’s because in Canada they don’t recognize any need for this test because Type 1 diabetes should be apparent at diagnosis. Antibody testing is recommended only in teens who may be difficult to distinguish type or adults who’ve exhausted all oral med options. (That’s according to the CDA, and I’ve been told the same by several people).

Type is not always apparent at diagnosis, far from it. If this were the case so many of us wouldn’t have been misdiagnosed. When you add to this most PCP’s lack of knowledge of diabetes, it is very often missed if it is not obvious. When I walked in the door at 58 years old with a blood sugar of 325 and all the symptoms (but NOT in DKA), still a bit overweight but losing rapidly they said Type 2. If they had noted the weight loss, my previous diagnosis of thyroid disease and then gone on to test antibodies they would have picked up my Type 1 status. Testing is the only conclusive way to establish Type.

I was dx’d as a type 2 but now that I am reading more about MODY 2, I think that may be more appropriate. I’ve never had any specific lab tests done to rule out other types of D. You think doctors would do that first to make sure you have the right type. I understand the MODY tests are expensive and not covered by insurance. When I talk to my doctor about other dx he doesn’t seem impressed. I’ve got my HbA1c down to 5.9 with Bernstein diet but I would really just like to know if I have a signaling problem in the liver.

I was initially diagnosed with type 2 diabetes in June 2009 by my family doctor. He had me come in and told me that he had never seen anyone come in as high as I did with my glucose levels at a 12.1. He gave me a prescription for one of the pills. Within the first week, my glucose levels did come down, but they were still high and I started getting really sick. He changed my pill again and when I was having the same problems, he told me that I needed to see an endo. By the end of the month I had been on 3 types of pills and all of them made me really sick. Any carbs I ate made my glucose levels go above 300, especially in the morning.

My endo continued to go through the pills until I was at the last one. That is when they decided to put me on long acting insulin to see if that helped. They told me I had diabetes for at least 5 years because of the way my body was reacting to normal treatment. All of the females in my family, thin or not, had type 2 diabetes. My endo did not know what tests to run. In September or October, I went on the long acting insulin and I still felt horrible with high sugar levels, I began doing my own research. Everything I was reading pointed towards LADA. I called my endo and asked her to order a c-peptide test. She received the results within a few days and called me immediately and told me that I was producing almost no insulin and that I was not a type 2 diabetic and said that I have LADA/type 1.5. I was immediately put on fast acting insulin in addition to the long acting insulin and was taking about 8 injections a day. I was still not feeling well, especially in the morning, when my sugar levels were still well above 300. That is when my endo suggested that I consider going on an insulin pump to give my body a steady flow of insulin 24/7. Two weeks ago when I started using my OmniPod, it changed my life and how I felt. After 10 months, I am finally feeling almost normal again. Now I just have to go through the trial and error of getting the right settings. It was also discovered in the past 2 weeks, when they raised basal amount of insulin in my pump, that I was taking way too much insulin and my body was having some sort of response to it. My endo said that I had antibodies attacking the insulin and that is what was making my sugar levels go up.

>> I was upset that I had not been given appropriate treatment, but thankful that it was only one week that I was misdiagnosed. <<

I wish that had been my case. And I wish I could have gotten an apology from the losers who refused to give me insulin while I was dropping 40-50 lbs on a 4’8" frame in a mere 6 weeks. It took more than 15 years before I got a proper diagnosis. If it weren’t for the fact that I was extremely compulsive about my diet and exercise routine, I do not think I would have survived.

I agree that doctors do respond to the pressures put on them from the insurance companies – regardless of whether their patient has insurance or not! I also think that another issue plays just as big a role: Context, and especially the context in which you are diagnosed. I use myself as an example:

I was diagnosed when I was 26, and a doctoral candidate at a big, midwestern university. I was seen by a physician in the student health center, who refused to give me a dx of either type 1 or type 2. Instead, she left that for the endo, who did, in fact, diagnose me with type 1, but who then decided that I didn’t need insulin, despite my continued rapid weight loss – 40-50 lbs in 6 weeks on a 4’8" frame. Of course to him I was a type 1: I was young (barely 26), in school, and in a student health center. All young people are type 1, are they not? Especially back in 1993.

When I got home, my dx was changed to type 2 – by a family doctor, an osteopath, no less. I had to be a type 2 in his opinion. There I was, not on insulin, and doing relatively “OK”. After all, my fastings were just fine and my A1c wasn’t over 8, so hey, I was doing great, according to him. Unfortunately, he also completely ignored the 200+ post-meal bgs that the A1cs were hiding. Again, the setting in which he saw me, I believe, influenced his thinking strongly: He saw me in his general practice, which included a lot of older people, a lot of heavier people, which meant a substantially higher proportion of type 2 diabetics. That was the “default” mode for him, and of course, he was going to do everything he could to force me into that mold. It’s cognitively economical, after all.

Docs are human, after all, and like most of us, will interpret new things within the context of the wider population within which we work (or more lyrically, we see the world through our own peculiar shade of rose-colored glasses :slight_smile: ). And if your doc isn’t particularly self-reflective (haven’t met many who are), then you’re likely to have one who will go with what he thinks are “well-trained reflexes”, but which are, in fact, more or less just knee-jerk reactions with just as much conscious, voluntary thought.

Angela, what a horrible story , 15 YEARS ???.
Luckily you knew how to take good care of yourself.

Hi AngelaC: I am so sorry for what you had to go through! I do hope that by sharing our stories and teaming together we can change this insanity of misdiagnosis. BTW, the endo I saw in the hospital had the guts to apologize to me. I was shocked, but I do think it allowed me to readily forgive him, and we moved on. He was my endo for years before an insurance change (to Kaiser) meant I switched.

You know Kelly it really worries me when I read posters questionning their diagnosis and learn that they are using the Bernstein diet to get their A1C’s down to normal or just above normal levels.

My colleague at work just did a few months on a monitored Bernstein diet and they were putting him into Ketosis with his daily caloric intake, specifically, to burn fat. I talked to him about diabetic ketoacidosis and I asked him to ask his clinicians how closely Ketosis relates to Diabetic Ketoacidosis or how much does it differ. He was told that he would not be able to follow the particular diet regime that he was on, if he were a diagnosed diabetic.


What you will find is that many people talk about Bernstein, but they have never read the book and they certainly don’t understand what they are talking about. Have you read the book? None of my doctors have read the book. Part of the problem is that the mainstream dietary guidance is terribly misinformed. It is not evidence based and it does not present even the smallest whiff of informed guidance. Ketosis is a normal ongoing processes, it happens to “everyone” “everyday.” Ketogenic diets by definition drive ketosis. This is totally different from DKA. Arguments that being in ketosis places you at higher risk of DKA are just misinformed.

And as you note, it worries me that patients must turn to Bernstein’s diet as the “only” available method to control their blood sugar levels, the medical establishment is just letting them down.

bsc, well said!!!

I don’t know how you tolerate it bsc. I can’t even begin to understand why your doctors would hesitate to order the tests that you need to confirm a diagnosis. I hope you have started to make your requests in writing and insist on a written response, so that you will at least have a paper trail in the event your situation worsens.

I have not read Bernstein’s book as I am not dieting and neither is my T1 son, it was my colleague who was dieting and one would think that if clinicians are taking blood tests, giving injections and analyzing diet results that those individuals should be able to answer questions about what Ketosis is and how it differs from DKA. I would not want to be monitored by someone who does not have a clear understanding.

I hope that you get some resolution. I know from a number of your posts that you are constantly researching. How can your doctor ignore your requests for tests?


Well, my story has taken on new twists. I have had some tests and some results, unfortunately, nothing leading to a resolution of my story. I’m not ready to talk about it yet, but I will shortly. We each have to deal with our own path. Diabetes is a very unique condition, and everyone is different. Most doctors have very low expectations for diabetic patients and are unprepared to deal with someone like me. I have in the past invoked written requests and registered mail to put certain doctors on notice, but that is a fairly extreme measure. In either case, I know that following my very low carb diet and exercise can avoid any serious problems such as DKA despite a failure to obtain any effective medication.

As to Bernstein, one must realize his book is not a diet book, it is an comprehensive description of his understanding about diabetes and his techniques. Atkins is a related diet, and it may be that there was some confusion with the Atkins diet. It was Richard Bernstein that pioneered employed self monitoring of blood sugars, basal-bolus therapies, carb restriction and then carb counting approaches. If you want an explanation of gastroparesis or want to know whether your neuropathy will heal and how it help it, Bernstein will give you practical and competent advice.

Just because a medical professional has been trained with a certain practice, regime or knowledge does not make them an expert. To this day, Bernstein is considered a modern Elliot Joslin and is a pariah to the ADA and establisment. Medical professionals are mostly following the ADA guidance. Yet, bit by bit we see the mainstream ADA over the years adopting his ideas.

Again, well said bsc, particularly about Bernstein!!! It’s my humble opinion that the Atkins maintenance may have too many carbs for T2s who aren’t on insulin. You have to experiment with foods. I can have a mandarin with little effect on my BG but a banana sends it crazy.

I’m so sorry that your diagnosis saga goes on. Been there, done that with this and another condition and I now have little faith in the medical profession.

I vet any new medical people very carefully. A few pertinent questions usually does it. Then either my eyes cloud over listening, or I take notice. I’ve given up arguing with “experts” who suggest 200-300gr of carbs per day is absolutely necessary. We know it’s not. By the same token, if I want to have a slice of chocolate cake, I know I can manage it with my pump and have my HbA1C stay below recommended values (with c-peptide almost zero now). Sometimes, for me, it’s a trade-off. Someone else may want to be more strict with carbs, others less.

In the end, my health is my responsibility alone and it’s my choice what to do about it (and to what degree) with what’s available. But to hear sagas of so many misdiagnoses still makes me hopping mad!


The author is obvious, but what is the title, name of his book, as I would definitely be interested in buying copy. David is not dieting and does not need to diet at present, but with his current activity level (17 year old) he is consuming a enormous number of daily carbs, any better understanding of basal-bolus therapies that we can gain, will only be helpful.

When you are ready to talk about your most recent test results, I am most certainly interested in hearing what you have learned and what you have to say. In the meantime, take care and thank you for offering your help to us.



Dr. B wrote the book “Diabetes Solution” ( This book is available at bookstores and my local public library carries it. Other good books you might consider are “Using Insulin” by Walsh ( and “Think Like a Pancreas” by Schiener (

Thanks for being a sympathetic ear.

Yes, it worries me as well that many diabetics don’t get proper guidance from their doctors.