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My husband and I are not new here but I couldn’t get logged in without re registering. We have been away for a while. He was diagnosed with t2 diabetes and later by an endocrinologist was treated for 21+ years as a t1 diabetic. Now the new endo thinks he can’t be t1 because we have such good bg control. The former endocrinologist died, taking with him any hope of getting Ronnie’s diabetic records. I have called the state medical board and everywhere with no success, finally being told to go to a lawyer. I am afraid we will loose Medicare insurance benefits for the insulin pump and CGM . His recent 5 hour fasting c-peptide score was .7. Not a t1 diabetic score. His mom and grandfather died with diabetes. Many maternal family members are diabetic, some diagnosed as children. I need to get help to find out what blood tests to order to sort this out. ( the new endo did not order them). We can’t afford to loose the insulin pump and cgm benefits. I have located one letter to Dexcom confirming Ronnie to be T1 but no labs accompany the letter. I have a copy of another letter stating Ronnie is a very brittle T1 diabetic and must test 10 or more times a day. His new endo wants to only see him every 4-6 months and the insurance and supply companies require every 3 months. Has anyone here got knowledge of where we can turn. Our endo is young and not diabetic. Our deceased endo was t1 diabetic since age 10 years. He had great credentials. I can’t believe he did not know the difference between t1 and t2.
Thanks for any advice or suggestions.
 

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Hi, Poparon. I remember seeing posts about Ronnie a few months ago. I'm sorry you had trouble logging back in again. Another member here had a similar problem; we'll let our tech support know about it. Does Ronnie want his ID back, too?

I must admit the idea of a doctor not making his or her records available to selected others at the time they stop being a doctor (death, retirement, etc.) is new to me. Surely even if the deceased endo was in the peak of health at the time it should have occurred to him/her/their clinic/the state medical board that something could happen to the practitioner while patients lived on and needed their records. But I'm preaching to the choir here. 😐

If insurance and supplies require three-month visits, why the endo wants to see Ronnie beyond that interval is, again, a mystery. If, indeed, it is possible in your state for a doctor to not pass along medical records, I would think the new endo would want a battery of tests just to cover his/her backside and establish a baseline for Ronnie's medical situation.

Is Ronnie asking for the records through his new provider (formally, through a written records request)? I can see that they might not release records to an individual but the former endo's clinic/estate/state medical board/etc. certainly should accept a records release from a clinic Ronnie has approved legally.

Any chance you can change to a more understanding endo even if the new one is farther away from you? This new one doesn't seem to have a good grasp on treating an older brittle T1. It's also a huge error for him/her to believe that the difference between T1 and T2 is the level of glucose control. This site could show him many people in excellent control, both T1s and T2s.

There are antibody tests that can be done to identify antibodies present in T1 diabetics that are not present in T2 diabetics. The GAD test is one of them. Tests that look for ICAs (islet cell cytoplasmic autoantibodies) and IA-2As (insulinoma-associated-2 autoantibodies) also can differentiate T1 from T2. All three of these can be examined in one blood draw.

Maybe the best way through this new endocrinologist is "around:" Even a family practice/general practitioner doctor can certify T1 status; Ronnie should not need an endocrinologist for that. Ronnie's regular doctor also may be able to recommend a more empathetic endocrinologist. Once you've reestablished Ronnie's T1 status, the Dexcom letter should carry more weight (though I don't know how its authenticity could be confirmed).

Good luck, Poparon (and Ronnie)! It's unfortunate you have to deal with this kind of stuff.
 

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Hi Poparon, sorry to hear of the issues you are having. It's a shame the state medical board is not being more cooperative.

Is the old endo's office still physically there, not taken over by some other business, I'm assuming his death was recent. If it is maybe you can find out how to contact someone from his staff that can still access the building and physically get you the records. If it has been taken over by something else, maybe the new occupants or whoever owns the building can tell you what was done with the records that were kept there. Surely they would not have been destroyed. I would think maybe a lawyer may be needed to cut thru any red tape.

Best of luck to you Belinda, we'll be praying for this to get worked out in your and Ronnie's favor.
 
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