I’ve had quite a time this year with blood glucose. I was first experiencing hypoglycemia multiple times a week and I was referred to an endocrinologist. I was put on the freestyle Libre 2 to watch BG patterns and after a while it started showing my BG going high. It would often times spike into the 200s and I’ve had it be briefly in the 300s.
Right now my endocrinologist has me diagnosed with “unspecified hyperglycemia” as my antibody testing came back negative. I really want the Dexcom as my endocrinologist had me on the Dexcom pro for 10 days and I loved it. I was just denied insurance coverage for the Dexcom g6 because I’m not yet “diagnosed”. My endo is still trying to figure out what’s going on and has considered MODY but I cannot afford the testing. So does anyone here know how to possibly get coverage for the Dexcom without a diagnosis of type 1 or type 2?
How many antibody tests did your endo order? There are several antibody tests and as I understand it, testing negative on these tests does not rule out a T1D diagnosis.
Has your endo ordered a C-peptide test? This will measure the amount of insulin that your pancreas produces. If low, it supports a T1D diagnosis. If high, this can argue for a T2D diagnosis.
While we think of endocrinology as the specialty that absolutely knows diabetes, most practitioners have a lot of T2D experience and little to no T1D experience. And many endos still operate with the misunderstanding that T1D is diagnosed in children and T2D in adults, usually in obese adults. The truth is that T1D can be diagnosed at any age and more adults are diagnosed with T1D than children. It’s also true that T1D can be found in adults across the entire weight spectrum.
Another test that you can ask about is an oral glucose tolerance test (OGTT) with a concurrent insulin assay, also know as a Kraft survey. This test administers a specific amount glucose and then measures both glucose and insulin for up to two to five hours following the glucose challenge.
Most modern doctors are familiar with the OGTT but not with the additional insulin assay. This part is critical because the nature of the insulin response clearly separate T1D and T2D.
MODY is relatively rare and as you’ve found out, a very expensive test.
Do you have an employer insurance plan? Sometimes employer HR/benefits can help get coverage, based on how specific the plan requirements are. I had similar situation several years ago, and employer HR resolved it.
I’ve had 5 different antibody tests done including zinc transporter and they’ve all come back negative. When I had my c-peptide levels checked 2 months ago it came back on the low end of normal. I am on an oral medication currently and at first it seemed to help but my BGs are slowly creeping back up. I’m not overweight and I have a family history of type 1. I just feel kind of pushed to the curb with my endo. I appreciate your insight, I just wish I had a set diagnosis.
Unfortunately, I don’t. I’m currently insured with BCBS FEP. I thought about appealing it but my doctor would have to claim it medically necessary and I’m not sure she would do that.
This is consistent with the LADA form of T1D. It contrasts with most cases of T1D onset in children which seems to happen quickly. The C-peptide near the low end of normal could be a level that is slowly sinking below the lower lab limit.
T2Ds usually have a high c-peptide level due to insulin resistance.
I’ve read many accounts over the years of early LADA cases getting misdiagnosed and treated like T2D cases. Does your doctor see many T1Ds? Perhaps getting a second opinion could help nudge the system to give you a diagnosis. I would look for a practice with a lot of T1Ds. Good luck!
The requirements for Dexcom with most insurance is 4 or more finger stick BG tests per day (documented) and either MDI (multiple daily injections with Basal/Bolus) or insulin pump. Not being on any insulin yet is really the clincher for your insurance most likely, unfortunately.
You do seem to be heading towards insulin though with BG’s hitting the 300’s however most Dr.s are hesitant to prescribe insulin until your BG’s stop coming down on their own as they are afraid of hypoglycemia. What’s your A1C, if you would be willing to share?
Your health insurer probably has a medical policy for coverage of CGM. Most of these policies read almost like a checklist. If you can contact your insurer (or check their patient website) and get a copy of the policy you will know what boxes need to be checked by your endo to get the coverage.
It’s fruitless to guess what is in these policies, but you (the insured) are entitled to get a copy of it. If you decide to send an appeal you can reference the medical policy and state why your symptoms meet the criteria for coverage.