Random glucose test – This is usually a fingerprick, or done while draining your arm/body of blood for other tests.  They test the amount of glucose (sugar) in your blood at the given moment.  Two random tests above 200 mg/dl is a diagnosis for diabetes.  That is kind of tricky for us with CFRD since illness is common and so is steroid use, which will give you higher than usual blood glucose levels.

C-Peptide test – I was told there is no real ability to measure the amount of insulin your body produces.  But when your body produces insulin it also produces a protein, c-peptide.  In theory if your body does not make enough insulin, you won’t make much c-peptide either.  Usually this means that your pancreas has given up the ghost and is no longer working properly.  I had this test done, as required to get insurance coverage (my crappy old policy) for my insulin pump.  Welllll… I failed the test… or did I pass it?? Turns out that my body makes enough c-peptide to qualify me as “normal” and not needing insulin.  Well… that is by far, not true.  The exact cause of CFRD is truely unknown to this date.  Of course our lil pancreases are on their way to complete self-distruction (which mine showed via a CT scan), but there is a study out there that claims the creation or use or something about the natural made insulin doesn’t work correctly.  Which is why I apparently have insulin dependent diabetes, but still have a normal amount of c-peptide (or at least I did last year).

Antibody test -  This is where Type 1 diabetics differ from all other types and exactly why CFRD is NOT Type 1 (although treatment is similar which is not to be confused with cause).  Type 1 diabetes is an autoimmune disease which is caused by antibodies that attack the insulin producing cells, the beta cells, in the pancreas.  If you have diabetes and have antibodies, you have Type 1.  If you have diabetes and do not have antibodies, you have a Type Other than Type 1.  A cure for “Type 1″ diabetes will not cure my diabetes and that is why I am such an advocate for the “Type Other”s.  It is possible for someone with CF to have Type 1, it is the same rate as for the “normal” population, but just because you have cystic fibrosis related diabetes and you are insulin dependent, this does not make you Type 1.

Urine Sugar tests – If you have too much sugar in your blood, it will spill over in your kidneys (which is not good) into your urine.  Usually one of the first tests they do when they suspect diabetes.

Liver function tests – For folks with CF our livers are at risk of damage from all the drug coctails we are required to take.  I am only mentioning this test because I know a few CF docs who try putting their CFRD patients on pills for treatment instead of insulin shots.  I guess pills are ok, but I would be hesitant because most diabetes pills have a high risk of causing liver issues…. Just one more thing I do not want to add to my list of things I need to deal with.

I am sure there are plenty of other tests I am not noting in this post.  Anyone else want to chime in?

I spoke with the insurance co, they believe their independent reviewers are up to date with all the latest info in their field. I approximate 4,800 people in the US have CFRD. How is every single endocrine specialist supposed to know the ins and outs of such a rare disease? My insurance “assured” me that their independent reviewers are up to date with diabetes (no mention of CFRD). Why am I not convinced?! Ha!

I am able to request my next appeal to be done by a specialist in CFRD, but I will not be assured that my request will be granted.

Learned something new today thanks to Dr. J. I have a normal c-peptide level, which the insurance is using to deny my claim. If I had an abnormal c-peptide level, this would diagnose Type 1 (low level) or Type 2 (high level) diabetes. CFRD is neither, which is why my levels are “normal” and why I have CFRD and not Type 1 or Type 2.

I want to send out a special “thank you” to my CF clinic nurse. I can’t thank her enough for all the help and support she has given me over the years. I know I am getting the best care because she always goes over and beyond to make sure of it.

This is an interesting fact. Colorado is a state that allows health insurance discrimination. A healthy friend of mine, “healthy” with exception to a small shoulder pain he had last year (which was treated with a cortisone shot and has not reappeared), was denied an individual policy because of the shoulder issue. So I really doubt I could get a self-insured policy in this state. I may have to consider something else.

Just started shaking, dizzy, and slightly confused, feeling like I am in a tunnel…. checked sugars, 74… off to go get a snack! Yum yum chocolate covered pretzels here I come!

P.S. Thanks for your support Jesse!!