Replies to This Discussion

Permalink Reply by Melitta on January 12, 2011 at 8:16pm

In people with adult-onset Type 1 diabetes/LADA, the most common antibody is GADA, with ICA not too far behind. IA-2 is somewhat rare in LADAs. All spelled out, the antibodies are glutamic acid decarboxylase antibodies (GADA), islet cell antibodies (ICA), and insulinoma-associated (IA-2) autoantibodies. One thing I would caution LiL MaMa and April about is that studies (see my blogs for references) have conclusively shown that going on exogenous insulin early preserves remaining beta cells. Even small amounts of long-acting. Best of luck to you! Just be persistent and your own best advocate to get the best medical care for yourself.

Permalink Reply by LiL MaMa on January 13, 2011 at 7:34am

That is why I want to be put on insulin to preserve the remaining cells but my endo is refusing because my numbers are so good...but he doesn't know what I'm doing to get those numbers!!! So should I ask to be tested for GAD antibodies at my next appointment?

Permalink Reply by Melitta on January 13, 2011 at 1:10pm

I would request the full suite of antibody tests. Also, we do have one TuD person whose doctor told her that she was not GAD positive, but when she actually saw the lab results she was slightly positive, so indeed did have autoimmune diabetes. You are "slightly antibody positive" like you are "slightly pregnant!" I would let your doctor know what you are doing to achieve these results, and insist that you be put on insulin (even small amounts of long-acting) to preserve your beta cells and prolong your honeymoon. Let us know how it all goes.

Permalink Reply by LiL MaMa on January 13, 2011 at 3:53pm

Thanks for the wonderful advice Melitta :)

Permalink Reply by April on January 13, 2011 at 8:23pm

Wow, Melitta....that is sooo interesting. I am thinking of getting my labs faxed to me. I think I'll call tomorrow.

Permalink Reply by Jean on January 29, 2011 at 5:38pm

I am currently struggling with the same situation. Every article or journal I read points in the direction of insulin therapy. I am slim and very active. I do not consume bread products and eat a very low carbohydrate diet (of which mostly comes from fruits and vegetables). I saw a significant reduction in my A1C the first year but now it is creeping back up again. My doctor refuses to introduce insulin because he also believes my numbers are "ok" but he does not realize how restricted my diet is. I am currently looking for a second opinion and hope to hear back from an Endo in Syracuse. It is completely frustrating to know that you are doing everything in your power to try to be "normal" but what you truly need is not being provided by a medical specialist. It is hard to take "no" for an answer when you truly want the best for your body. I believe you definately should ask to be tested for the GAD antibodies (my test was positive and was also told I have low insulin production). Continue to educate yourself and as Melitta mentioned, we HAVE to be our own best advocate.

Permalink Reply by April on January 29, 2011 at 5:51pm

Oh, yes, we HAVE to be the Quarter Backs of our disease, to use a "male" sports analogy. But it is a good one. If your doc doesn't accept this...FIND ANOTHER DOC! Seriously. A friend of mine who is a very successful business woman has breast cancer I and I only found out 2 days ago, though her mastectomy was in late Dec.

Well, SHE told me she decided against the top oncologist in the city b/c he was obviously "Command and control" and she was NOT going accept that. And, I have to say that I feel the same way right now...after the health problems I have been through in the past 12 months.

I have been dismissed and discounted and ignored and I simply WILL NOT STAND for it any more. If I do not get copies of my lab reports, if I do not get answers, if I do not get full knowledge...I WILL WALK.

I am just as intelligent as the doctors. I did not choose to go into their field..so I am not as well trained...but I can understand the concepts JUST as well as they can, thank you. In fact, I have MADE diagnoses they have missed because I spent the TIME that they could and would not to dig in and roll up my sleeves.

Sorry, if I sound a tad militant...but I guess, at this point I am.

I would go back to your Doc, Lil Mama with a slew of questions ALL written down in bullet points on a piece of paper...outlining what you do know, what you do NOT know and what you WANT to know. Put it in black and white and have 3 copies. One for you, one for the doc and maybe one for the nurse or the resident who might also be in the room.

And go from there. And if the Doc is offended...why then look elsewhere...

Best wishes...

Anni

Permalink Reply by Jean on January 29, 2011 at 6:24pm

Love your spunk.

Permalink Reply by Melitta on January 29, 2011 at 7:37pm

Hi April/Anni: I was wondering how you are doing! Good to see your post. All the best, Melitta

Permalink Reply by LiL MaMa on February 13, 2011 at 4:20am

lol thanks! Thats pretty much what I did and as of 2 weeks ago I am now on humalog before meals. :) No basal yet though thank goodness I get to wait on that!

Permalink Reply by Melitta on January 29, 2011 at 7:36pm

Hi Jean: Because you are antibody positive, you definitively have Type 1 autoimmune diabetes, and the only treatment for T1 is exogenous insulin. Yes, LADAs can go for a time without insulin, but why?! Crazy as it is, some people here have gone on insulin by just getting R or NPH (which don't require a prescription). But hopefully you can convince your doctor to do the right thing and prescribe some of the newer analogs.

Permalink Reply by Paul Underwood on February 12, 2011 at 4:04am

My endo said starting insulin immediately will preserve the beta cells, but some doctors may have different views. I started levimer at 5 units per day . Ive been Lada for about 10 months, still in a kind of honeymoon phase but now on 16 units levimer and about 10 units novorapid per day.

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