Replies to This Discussion

Permalink Reply by MyBustedPancreas on April 24, 2012 at 9:31am

I agree. I read this article and was shocked that there was so little focus on how some of these individuals are actually misdiagnosed and are put in significant danger when started on oral medications.  I have discussed this with my endo because I have a sibling who, while not T1, it at very serious risk for developing it.  My endo said that one concern is that many of the oral medications are contraindicated for people with t1, and there's concern that some oral meds could even hasten the development of kidney-related complications in T1s if prescribed inappropriately.  Not to mention the risk of going into DKA! 

My personal approach to such articles is to not only respond with a comment on the webpage itself, but to also write the author.  I have done this many times when coming across an article that provides erroneous information about diabetes and, more often than not, I do get some response from the original author (and sometimes even an apology!)

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Permalink Reply by smileandnod on April 24, 2012 at 9:33am

This made me angry too because I was misdiagnosed and was begging to be put on insulin while they kept pushing T2 meds on me. It also makes me angry that misdiagnosis is so common but I've never seen an article written with the focus on why or how so many are misdiagnosed.

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Permalink Reply by Zoe on April 24, 2012 at 11:05am

It boggles my mind how someone can publish an article in a reputable magazine with completely inaccurate information! And knowing that she was provided ahead of time with the correct information is even more staggering. Did she set out to prove a pet theory and then just ignored the information that contradicted that theory?

I don't know why I should be surprised. I was googling recently for another condition with correlations to diabetes and there was all the incorrect info from well-known websites like wikipedia, medmd, and others I can't recall: "only ten percent of diabetics are type 1's, type 1 is diagnosed in childhood, etc, etc." And why was I surprised also that the data correlating the other condition with diabetes was all for type 2?

I was misdiagnosed 5 years ago and it was in a rural community. Five years later, with LADA being discussed extensively in the non-medical professional community, and I am hoping some progress is being made. Reading posts from newly correctly diagnosed LADA/Type 1's has given me hope. But then people in "authority" (authors of articles, whether they actually have credentials or not) write articles like this and set it all back. We keep reading the phrase "thin type 2's". Has anyone actually met one? And not someone who was diagnosed and then lost weight. Let's put it differently: Is there any "thin type 2" on this board who has had antibody and c-peptide testing and still been determined to be type 2? Perhaps a few exist, but the vast majority of "thin type 2's" imho are misdiagnosed type 1's.

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Permalink Reply by Donna H on April 25, 2012 at 12:51am

This is upsetting. I am another who was misdiagnosed. I actually walked around -- traveling all over with my typically crazy work schedule with BG over 500 every day begging to get into a new endo in my new state of residence -- any endo -- to figure out why my once well controlled alleged Type 2 had, after a few months, gone so wrong. I was so so sick but I kept pushing through my daily life not understanding that I probably should be in a hospital. And even when I finally did get into an endo to give me insulin she didn't do the antibody testing. It took more months and finally finding the right endo to get the right tests and proper education on managing my type 1. I'm tenacious yet I struggled to be heard and get proper help. What happens to those who are not as bullish as I am? I am forever appalled that there is such a lack of understanding about LADA. I believe that antibody testing should be the standard. I was so fortunate that I didn't end up in a coma from my bg soaring during that period of misdiagnosis. I was lucky. I shouldn't have had to rely on fortune when all could have been avoided with proper testing at onset. Every article or other form of public miscommunication about LADA perpetuates situations like the one I endured. It's irresponsible reporting.

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Permalink Reply by Shawnmarie on April 25, 2012 at 1:51pm

Short answer: Yes, you should be asking for more tests to see if your T1/LADA. I was diagnosed T1/LADA seven months ago at the age of 46. I need only tiny amounts of meal time insulin to control my BG very well. My pancreas covers my basal needs. If I were on no insulin, but limiting my carbs more severely (I eat on average 120g a day), I would probably still have fairly good numbers. You could very well be a honeymooning T1 with slow onset.

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Permalink Reply by smileandnod on April 25, 2012 at 2:00pm

Hi irish, you've done a great job of gaining control of your bg and researching so good for you! :) I agree that you should push for more testing. I think it's important to be correctly diagnosed if you are type 1 because insurance coverage will typically allow more for type 1s than they will for type 2s when it comes to test strips, cgms, pumps, etc. and you may need additional resources eventually. Your description of your history certainly does throw up enough flags for further tests.

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Permalink Reply by Melitta on April 25, 2012 at 2:39pm

Hi Irish: I would ask for additional tests, including c-peptide and the full suite of antibody tests (GAD, ICA, IA-2). I think it is important to get a correct diagnosis and get correct treatment. I also wrote a blog with tips for the newly diagnosed Type 1, which I hope might be helpful to you. Best of luck!

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Permalink Reply by LACA310 on April 26, 2012 at 12:04pm

I think i may have been in the same boat, just figured it out a bit later than you. I was diagnosed as a T1 in the hospital -- DKA with BG off the meter and an A1c around 12 at age 43. Put on MDI and got things in control. Seemed too easy, and after 2 years trying to figure out a new baseline that works for me, I have kept my A1c hovering around 6. Not in a honeymoon, but it seemed too easy, so had my C-pep done and came in at the very bottom of the normal range, so i am making insulin after originally being out of normal and testing positive for antibodies. Also I am in much better shape than before, but was only just pushing chubby and was always somewhat active. On occasion, I have under bolused while snacking chips and quickly shot north of 300, so I know i have an issue.

To the point, my endo that is great, says that in light of the C-pep results, he would probably have me on meds instead of shots to control my BG if i was almost anyone else. The reason he doesn't is that I don't mind the shots, and being an active runner, i would be hampered on meds even though they would work. I can accomodate workouts with MDI within hours of a shot or in advance with a little planning. However, on meds, once you make a change, it can take weeks to adjust, causing lows and other issues during or in absence of workouts. I don't want a pump, even though it might be ideal.

So where does that leave us? Does a label really matter. I have 1 or 1.5, but I'm not going to split hairs. If i don't take something I will end up in the hospital, so I am going with Type 1. Sure meds COULD work, but so would fasting or skipping carbs - it's all a continuum. I don't like 1.5 because if I end up in the emergency room, I don't want them even thinking I have anything at all to do with a type 2. I kinda look at insulin sensitivity, more than anything else to distinguish 1 from 2. If you are taking or producing gobs of insulin then i'd say use meds (maybe MDI, too) because your body isn't using it properly. If you are using efficiently, either endogenous or shots, then act like a T1. Whatever gets your A1c in line and lets you lead the life you want is the treatment you should use, the rest is just for insurance to bicker about.

If I was diagnosed earlier, I would probably be feeling like you. I was so far gone in the hospital, that a T1 diagnosis works for me, but maybe I wouldn't have been as mentally accepting of it, if i was gradually eased into my current state over the course of years. I'd possibly be arguing a misdiagnosis or trying to understand why meds aren't working as well. Just do what works and for peace of mind, get your C-Pep done once or twice a year to see if there is a trend.

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Permalink Reply by Melitta on April 30, 2012 at 6:17pm

Hi Emmy: The "Type 2s" who are antibody positive (about 10% of "Type 2s") are actually misdiagnosed Type 1s. Type 2 is not autoimmune. According to the Expert Committee on the Diagnosis and Classification of Diabetes Mellitus:“Type 1 diabetes results from a cellular-mediated autoimmune destruction of the beta-cells of the pancreas. In Type 1 diabetes, the rate of beta-cell destruction is quite variable, being rapid in some individuals (mainly infants and children) and slow in others (mainly adults)” and "Although the specific etiologies of Type 2 diabetes are not known, autoimmune destruction of beta-cells does not occur."

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Permalink Reply by BadMoonT2 on May 2, 2012 at 3:39am

The big mystery in T2 has always been why does insulin resistance start. This study, which confirms the results of an earlier study, sheds light on that question and opens up a new avenue for further research.

I wonder how long the popular press will take to pick up on this and get off their you gave yourself T2 schtick?

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Permalink Reply by acidrock23 on May 2, 2012 at 3:52am

I wonder as well if instead of T2, it might be more appropriate to look at it as different diseases of different, albeit related systems? Biology is so complicated it seems as if you had a couple of "equations" running in a different way it could create the sort of layered challenges people report w/ T2? Maybe it ought to be T5 or T6 instead of just "2"?

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Permalink Reply by BadMoonT2 on May 2, 2012 at 4:08am

My understanding is that there are around 14 different genes involved in T2. Just the fact that some classified as T2 are thin points to the correctness of your view.

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