Seeking stories of misdiagnosis


You sound so much like me before I went on the pump. I thought changing from Lantus to Levemir had fixed my erratic lows but it came back again this summer. I was going nuts trying to balance avoiding nightime/fasting and afternoon lows while not going high before dinner. If I fixed one thing, then the other thing was out of whack! All my providers said the pump was likely my best solution and it has been. I hope something works out for you, I really do. One thing that really helped me keep my sugar steady were Extend snacks. I noticed I would start dropping around 11am. but if I would eat a regular snack, I'd be too high at lunch. I ate 1/2 a bag of Extend crisps and it kept my blood sugar steady through dinnertime which was my problem time. Same for eating some before bed. I wouldn't drop 60 pts or so at night. I'd stay pretty steady and sleep better too.

Even though I’ve only been diagnosed since April, I’m already considering the pump due to my numbers being so erratic with no rhyme or reason for it. i need to start doing some research as to the best pump for me. so far, i’ve looked into the medtronic minimed which has the option of the cg monitor. i just don’t know if i’ll be able to tolerate wearing something on my body 24/7! Plus, it’s very expensive, even with my insurance. I’m going to start reading posts in the pump group to get some feeback.

Hi Gayle -

I don't think you shouldn't get a pump from the start but you certainly will have a smoother transition to pumping if you get the basic hand skills down while doing MDI. How often do you test each day? Do you have your insulin:carb and correction ratio's down? How carefully do you count your carbs - do you measure and weigh everything or do you just eyeball it? Have you actually done basal testing? The pump is just a nice tool - I certainly like mine - but unless your basal requirements are all over the place during the day you should be able to get your numbers under control without one.

I was told when I was 6 months in that it takes about a year to learn what you need to know to control your diabetes. That's probably a decent estimate although perhaps a tad low.

Don't worry about being hooked up all the time. Most of us get used to that in about a week.



Hi Gayle: Yes, many of us have been misdiagnosed as having Type 2 when in fact we have Type 1 diabetes. Manny Hernandez, founder of TuDiabetes, is one of the many on this site who was misdiagnosed (I was also misdiagnosed, albeit now 15 years ago). Check out my blog posts on misdiagnosis and also on autoimmune gestational diabetes (10% of caucasian women who are diagnosed with GDM are antibody positive and have new onset Type 1 diabetes). I’ll respectfully disagree with Maurie, I think getting a pump is a good thing, even at the beginning. You do need to be tech savvy, willing to test a lot, and willing to do all the work it takes to get good basal settings, I:C ratio, etc. But it can be done. Be forewarned, I do know a woman who started the Medtronic pump/CGM combo within 6 months of her diagnosis, and she is a bit overwhelmed and is grateful she is semi-retired. Best of luck!

You are another genuine Type Weird. That's my name for people who don't fit in the boxes (and I made it up a long time ago on another list!).

How are your cholesterol, triglycerides, blood pressure and waist circumference? Those will give you a clue as to whether you are insulin resistant or not. Sometimes lean people are "metabolically obese", when they have all the signs of metabolic syndrome. Whether that applies to you, I don't know.

The other thought I had was, maybe the higher c-peptide was a lab error. Lab errors happen all the time, and if a test seems off, then it should be repeated.

I've been following your saga of self-treatment, and wondering how you are doing.

Metformin is used (off label) by some doctors for overweight or obese Type 1's who exhibit insulin resistance. Gayle said she had been almost 100 lb. overweight -- and overweight usually goes along with insulin resistance. I don't know what her weight is now, but she may still have insulin resistance. Being Type 1 doesn't make you immune to metabolic syndrome.

I'll put in my story, although it's a little different from most.

My first problem was getting diagnosed at all. In 1991, I had fasting lab BGs of 138, and 3 months later, 131. Nowadays, that would be diagnosable, but at the time, the cutoff was 140, so my doc said I DIDN'T have diabetes, but rather hyperglycemia, but nevertheless, sent me to the Diabetes Center for a meter. There, they said I DID have diabetes, and gave me a meter and a meal plan. Then my doc moved away, and because I was concerned, I consulted an endo. I still had good pancreatic function at the time, and did come down after spiking after a meal; the endo took a random glucose 4 hours after I had eaten, and it was 92, so he said I DIDN'T have diabetes.

Then in August 1992, I had a coronary artery spasm, and my fasting BG was in the 140's so they said I had PROBABLE NIDDM (the term for Type 2 at the time). That school year, I started to get symptomatic -- the usual 3 symptoms -- polydipsia, polyuria, and polyphagia. Then in Aug 1993, my fasting was 160, and I received the diagnosis of Type 2 diabetes. Diet and exercise didn't bring my BGs down, and my doc sent me to an endo, who put me on Glucotrol (a sulfonylurea, which was all that was available at the time). Well, fastings with Glucotrol were in the 180's, and without Glucotrol were in the 180's, so I concluded that the med wasn't doing me any good, and asked to be put on insulin in May 1994. So it was 3 years after my first episodes of hyperglycemia, but only 5 months after my formal diagnosis.

Well, miracles happen, and insulin started to bring me down immediately! At least the fastings -- I started on one shot of NPH at night. Didn't help the postprandials any, but did bring down my fasting BG. So we went on the trial and error route of 70/30 (horrible lows, high PPs), mixing R and NPH (good luck when you don't really know how much you'll need, because it was before the days of insulin:carb ratio), Humalog when it came out. Eventually, I decided I wanted a pump -- doc demurred, and I put myself on the pump which was given to me by a friend who had gotten a new one. When I showed it to the doc, he relented and ordered me a new one. I did attend a pump training session, and it helped, but I was mostly on my own, because this doc didn't know anything about pumping.

Last year, my BGs started getting out of control, even though I had managed well for 11 years on the pump. No matter what I did, they kept going up and up. My A1c was 10.7, which for me, being a low glycator, was life-threateningly high, and I saw my doc ONE week before going into a coma, with a fasting of 302, and he did nothing. I almost died. My BGs had been running in the 500's and HI, and now I know that I needed serious help a lot sooner, but at the time, I didn't know how bad it was, and no one I asked for help from recognized it, either. A1c is not the be-all and end-all for evaluation of BG control!

So, anyway, I fired him and got a new endo. He has me down as a Type 1, because I'm not obese and also had, before my thyroidectomy, Hashimoto's thyroiditis, which is autoimmune, so I have the genetics for auto-immunity. Plus neither one of my parents, and none of my siblings or cousins have it. When I was fighting the high BGs the first part of this year, I gained weight because I was using so much insulin, but I have lost most of it. Neither my doc nor I know exactly what caused it, but I do know there is such a thing as auto-immune insulin resistance, which is said to last about a year, and maybe that was it. I do have metabolic syndrome, but that doesn't rule out auto-immune problems.

So I'm not a classic Type 1, and I'm not a classic Type 2, and I'm just grateful that I've been treated as necessary, without reference to type. I prefer that the doc puts me down as Type 1, because that gives me better insurance coverage. But the fact is that they just don't know what I have. And I don't think I'm unique.

Very interesting story. Thanks for sharing.

One thing that does happen in diabetics is an autoimmune reaction to insulin, not just the beta cells. These result in the so-called insulin antibodies. Some people develop an autoimmune reaction to particular insulins, and the immune reaction "eats" up the insulin, making is less effective. If your endo changed you to a different insulin which was suddenly effective, this suggests what might have been happening. Did you change insulins?

Cholesterol, triglycerides, blood pressure and waist cirumference are all excellent and I exercise 1 1/2- 2 hours a day/5-6 times a week.

Don, I can relate to not trusting doctors. My first misdiagnosis resulted in my appendix being taken when I was 19. And the rest would fill a book and includes 33 years of the wrong type of diabetes.

If we don't go to specialists (which are only partially free here) we suffer consequences with our GPs. I've just moved states, so now have to go through the awful procedure of being referred to all new specialists. Then I have to listen to much of their arrogant 'educated' rubbish and pay for it. I'm just not a grin-and-bear-it kind of person so I'm definitely not looking forward to wasting a day driving, waiting ages, listening and finding ways to respectfully tell them I'm managing my way. I'd be incredibly fortunate to find the kind of marvellous endo I've had for the last 12 years. Apart from that endo, my experiences with doctors over the years certainly doesn't inspire confidence or a willingness to rush out and find new ones.

Well, all my insurance company allows is Novolog, which I use in my pump. What I read about autoimmune insulin resistance is that it goes away in about a year all by itself, which pretty much fits my timeline. But I never had an antibody test, so this is just speculation. It really doesn’t matter at this point, because it has gone away, and my treatment remains the same. In the final analysis, I (like you), only care about getting appropriate treatment, because I like my functioning body parts, and want to keep them that way. Plus I like feeling well when my BGs are behaving!

I was diagnosed with diabetes in 2002 when I went to the Dr with flu like symptoms. My blood sugar was 608 and I was in Diabetic ketoacidosis. I was hospitalized. I received a lot of attention in the hospital. I had visits from many Doctors and nurses. One nurse finally said, “I know you must be wondering why so many people are coming and going. We can’t believe you are up laughing and talking as sick as you are. You’re supposed to be in a coma.” I believe that I had diabetes for many years before I was diagnosed and that my body was accustomed to those highs. I was told that I was Adult onset diabetic and that I was insulin resistant. Later I was tested and told I was type one diabetic and that my pancreas did not produce any insulin. Two years ago I was told that I am a type 2 diabetic that my pancreas produces insulin. Why so many different assessments? Living in this body I have come up with my own theory. I have an autoimmune disease. I have Sarcoidosis. It has effected my lungs, eyes, breast, heart, brain, tissues, joints, and skin that I know of. I believe that my pancreas has been attacked as well. When I have a flair up. I have a great deal of inflammation throughout my body. My sedimentation rate has been as high as 70. I can feel the inflammation in my organs and tissues. I believe that at these times my pancreas becomes inflamed and can not produce insulin. I believe that over the years my pancreas has been attacked so much that it is in bad condition. When I experience this multisystemic inflammation, my blood sugars are always out of control. No amount of insulin seems to help and I can go without food and still I experience high blood sugars( 300s, 400s). When the inflammation is under control my blood sugars are controlled with regular insulin therapy. I now take 65 units of Lantus at night. I’m on 50 35 50(B L D) of Novolog and have a sliding scale for additional Novolog. I take 500 mg of Metformin twice daily. I feel I have not been properly diagnosed. I also have Sjogrens Sydrome, dyastolic dysfuntion, Fibromyalgia, sleep Apnea and Diverticulitis. justCaprice

Very interesting assessment. I can see you’ve had to do a lot of detective work on your own to figure out what your body is doing!

I was misdiagnosed, my third doctor finally ordered an anti-body test, 6 months after the original diagnosis of T2 (Stanford, believe it or not)… given that my original Diabetes diagnoses was more than 6 months old at that time , I did not qualify for some of the clinical research studies anymore… My first two doctors ordered insulin tests to determine whether I was T1 or T2, given that I had pretty normal insulin levels (albeit at the lower end of the normal range), they concluded that I wasn’t T1… i guess they hadn’t heard about antibody tests.

At the beginning of LADA, your c-peptide can appear pretty normal. I was at the low end of normal for many years, although it did decline over time to zero.

Doctors are not recognising the sheer number of people with adult onset T1 and LADA, and are themselves responsible for the many who remain undiagnosed/misdiagnosed.

I have to agree about the lack of recognition. I was having blood sugar issues for about 10 years before my diagnosis (including reactive hypoglycemia) and was always told that there was nothing wrong with me. Also, a general decline in health with various, nagging health problems that all seemed to get better once I started on insulin, hmmmmm…

Was misdiagnosed at type 2 given Metformin which obviously did nothing. Meanwhile had two bouts of gastritis and had to beg to try insulin. Once they agreed, surprise surprise it worked! Wasn’t until sometime later when blood work was finally done that doctor surprisingly told me I was type 1.
Doctors need to quit diagnosing based on what you look like and do there job and investigate with the correct tests.

Well I will certainly add mine! My Gad-65 results came in Friday of last week. They were greater then 30(Quest does this because once they get to 30 they stop counting) and my cpeptide was 1.42 with a fasting of 118. I actually got a type2 diagnosis in 2005. So for years I thought I was a type2 and then I had my son in 2007. In 2008 I went into the doctor to find out at 28 I had thyroid problems…huh? I’m assuming that is when the antibodies started attacking? so for 3 years after the thyroid I was still type 2. oral meds were not helping and my fasting would be 250-300 and after meals would be 350-390. So I started to see an endo this year. She decided insulin was the only way to go since oral was not helping. Fast fwd to the beginning of this post. I spoke with her Monday and she said she will not type as LADA because I am not presenting as I type1 due to me still making insulin, and my bmi. She went on to explain that just because my gad65 was positive is only a marker that you have a chance to get type1…WTF? So here we are. I am glad that I have insulin…but upset that I am still misdiagnosed as a type2.

I saw an Endo specialist about 4 years ago because a Neurologist found a high GAD in my labwork… though I showed no signs of diabetes (other than lows), the Neurologist suggested I get screened for pre-diabetes. I was told by that Endo (who works for a highly-accredited university) I have nothing to worry about. Now jump to Sept. 2010… After 2 years of not feeling well, and seeing multiple doctors in search of answers, my family physician thought my constant thirst, nausea and sudden weight-loss warrented a glucose reading. My BG was 235 fasting. When I asked him if I was type 1 or type 2, he rplied ‘Type 2. Type 1 is juvenile and only kids get it’. He let me leave his office without checking for ketones, getting an A1c, or even checking my kidney and liver function. He just wanted to see me back in 2 weeks. I immediately cut carbs from my diet, and within a week saw my numbers drop from the 300’s to the high 1’s and 2’s… The doc decided to put me on metformin. This did not help any, and made me so sick. It was hard to function. I felt better without it.
The week I was diagnosed I purchased an informational book. It talked about LADA, GAD antibodies (which I already knew was hgh) and misdiagnosis. I knew then I needed to see a specialist. By the time I was able to see my new Endo, it was late October. She did bloodwork, and what do you know! Insulin therapy started the first week of November, and I haven’t felt this good in years.
I really like my family physician, but am switching, simply because I am frustrated that he was completely unaware of LADA. I wonder how many other patients he tries to treat which may be in the same boat. And after learning and educating myself so much over the past 6 months, I am also astonished at the care I DID NOT receive during those first few, and critical weeks following my diagnosis. My endo thinks I may have been in ketoacidosis, but nothing was ever done to check. There really should be more guidlines and higher standards to keep all physicians informed.

I had posted an item here in February but can’t find the thread now. You can see my old blogpost on this issue here.