Countdown to a diabetes misdiagnosis

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diabetes misdiagnosis Countdown to a diabetes misdiagnosisAs a lead off for the new year I would like to talk about a major issue I am currently pursuing where my diabetes is concerned but before I go any further, let me first say that diabetes is a very personal and diverse disease and some of my  health stories  may offend others but these are my very own diabetes stories that I am trying to share with you and not meant to be a general blue print for anything else.

First let me take a straw poll.

How many of you who know me or have met me personally believe that I am not the prototypical type 2 diabetic?

Yea I know, its kind of an oxymoron. What exactly is a prototypical diabetic?

Still one of the most asked or commented upon issues when my diabetes subject comes up is that I am not overweight. An issue that I have always dismissed as ignorant rumblings from normal people who generalize diabetes.

Yet I have had the same reaction from other diabetic’s who initially confuse me for a type 1 until I politely correct them.diabetes images Countdown to a diabetes misdiagnosis

The  point am trying to make here is that while we all come in all shapes and sizes the connection between obesity and type 2 diabetes is fact even though that connection is misunderstood and attached to every diabetic type.

Just because I am not overweight however does not necessarily preclude me from being a type 2  either.

But that is not the only reason, I believe I might have been misdiagnosed.

My diabetes diagnosis story is rife with misdiagnosis and mismanagement however.

When I was diagnosed I initially I was diagnosed as a type 1 and placed on insulin right away which lasted a few months until a new job, different physician and Private Health Insurance brought a type 2 diagnosis and oral medications.

Personally, I welcomed the type 2 diagnosis because of my  financial situation, needle phobia  and the tough time I was having with my Insulin Injections that I could have done virtually anything to stay with the type 2 diagnosis.

The harder I worked on corralling my blood sugars with oral medications, diet and exercise with some success I might add the less anyone questioned the diagnosis and why would they when everything was working.

Through everything I never questioned the decisions the doctors presented and might I also add that this was 14 years ago before LADA was as prevalent as it is today.

type 2 diabetes Countdown to a diabetes misdiagnosisLast but not least my Oral medications virtually failed a couple of years ago so I am on Insulin. Short of having a hard time getting an Insulin pump in the future (always wanted to try one) my diabetes is already managed by Insulin therapy which means that even with a changed diagnosis I will only have to switch my type of Insulin.

Secondly my needle phobia is no more so there is no issue there.

Truth be told I am only doing this for my own peace of mind, one way or another this diagnosis or misdiagnosis is not gonna change much the way I manage my diabetes psychically, I am not trying to sue anyone or any of that but I think this is one of those things that one just has to be sure.

Who knows I might end up being type 2 all along and this will all be for naught, my doctor has agreed to indulge me however and give me a refferal to an endo so I guess we will find out  in a few weeks misdiagnosis or not.

 

 

 

 

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5 Comments

  1. I had the opposite problem – I was diagnosed type 2 when I am in fact type 1, even though I resented with classic type 1 symptoms, rapid weight loss (& I mean rapid – 3 stones/42 lbs in about 7 weeks), thrush, ++++ketones….I was put onto oral medications, which obviously didn’t work, so after 10 days, I was handed 2 insulin pens, shown how to inject, told to take 1 once a day and the other 3 times a day. Carb counting/dosage was not really mentioned, just “play around with it until your bg levels come down” !!!!…The legacy of this was a major DKA – my blood ph on admission was 6.71…just about as low as it can be without death occurring, peripheral & autonomic neuropathy and me feeling very unwell/in pain every day of my life…I still get up every day & try to go to work, I do not have very supportive employers, they just think diabetes is something I should get on with – but the diabetes itself is now well controlled, it’s the neuropathies that I struggle with now….
    I know I’m not the only person that has experienced this, but what can I do except get on with life the best I can?

  2. Good luck in finding your truth . I was misdiagnosed as an adult at 27 with type 2 and put on oral meds. Within 3 months I ended up in the ER with a bg of 790, clearly the oral meds were NOT working. They upped the meds to the max dosage, added byeta, added another drug and still no help. Finally they just put me on insulin. A few months later I started being treated by an endocrinologist instead of just my family doctor who at last put all my confusion to rest doing another cpeptide test confirming I was indeed type 1 or LADA not type 2. After he finally got my numbers regulated with insulin and I got approved for a pump and now wear an omnipod. While my confusion lasted much shorter than yours i understand your frustration in just knowing the truth. I hope you can get some answers soon

  3. Well, as my friend Ann Williams, RN, CDE, PhD, reminds me, there are far more types of diabetes than have been described or studied, and while sudden-onset Type 1 and LADA have been reasonably defined, there are a load of other kinds of diabetes which have merely been thrown into the Type 2 garbage can. SO many things that can go wrong with BG regulation, and scientists are only beginning to realize that there are a LOT of hormones that affect it, not just insulin.

    So you may show reduced or absent C-peptide, and you may show antibodies, and you may not — antibodies are a toss up at this point, since you have had diabetes so long, but the major issue, as far as I can see, is getting the appropriate treatment.

    I don’t know if I told you my story, but I’m not overweight, either, but it became apparent 5 months after diagnosis that Glucotrol, a sulfonylurea, just wasn’t working, so I went onto insulin and never looked back. I agonized over type for a long time (it’s been 20 years since the first manifestations of diabetes reared their ugly heads!). At this point, after an ugly hospital stay in 2010, when I was BADLY maltreated, I don’t give a flying leap what type they call me, BUT I MUST get my insulin. If getting insulin means calling myself Type 1, then that’s what I’ll do, even though it’s never been CLINICALLY proven. My body just ACTS like a Type 1, and that’s close enough for me.

    So what I’m trying to say is, get your doctor to collaborate with you so that you will get the treatment you need with no questions asked in any possible situation. May you never go through what I went through!

  4. I hope that you find the answers Ronnie. I know that knowing isn’t going to change the outcome, but I still like to know the “why” of everything. Like Natalie said, because of the amount of time, you might not have antibodies left. Did you ever ask for copies of labs that were done when you were first diagnosed? Maybe they ran the antibody tests back then and you didn’t realize it. Back in the beginning, I never asked for copies of stuff. Although some insurance companies won’t give a pump to a T2, Medicare goes by the c-peptide test. You can be T2 with a low c-peptide and still qualify for a pump.

    • Thanks Kelly
      You know that is a great idea, I will chase up with them and see if I can get my labs from my initial dx, its been so long however that I don’t know if its possible, but there is no harm in trying is there…

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