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?

The Oral Glucose Tolerance Test, OGTT, has been used as the primary diagnostic of Type 2 diabetes as well as some of the Type Others of diabetes like CFRD, (once again, CFRD is not Type 1 OR Type 2 we are Type Other go look it up on the wikipedia!).  The OGTT is time consuming and fairly painless.  Like it says, the test is done by intaking glucose oraly and they test your tolerance to it.  In other words they take a few blood draws (or fingersticks) before and after you drink something like orange soda and see how your body reacts to the sugars.  If it doesn’t react properly, then the finger points to diabetes.

Getting ready for the test… Don’t eat or drink from midnight the night before, they say 8-14 hours.  I am not sure if black coffee is ok, but it seems like caffeine has different reactions to blood sugar levels in different people, so if I were you having this test I’d drink water and only water.

Next, you show up at the doctor where they sit you down hopefully in front of a TV because this test takes two hours of basically just sitting there.  Some doctors (or nurses) use a small IV to draw blood, so they don’t have to stick you mulitple times.  Others use a finger stick blood glucose meter, which you just better learn to deal with if the test comes up positive (I have to use my fingerstick thingy 4-8 times a day, sometimes more).  I had my OGT test 7 years ago, and I think they used the fingerstick method… but my memory escapes me.  …The nurse sits you down and draws a fasting level which will show what your blood sugar level is when you have no food in your system.  This alone can be enough to diagnose someone with diabetes (as it was for me).  If your pancreas does not make enough insulin to regulate the sugars normally produced in your body, even without food, more than likely you have da ‘betes, they call that fasting hyperglycemia.  Pretty much, if you have fasting hyperglycemia, you have diabetes.

As a quick note, to explain how insulin works simply, it is like a key that unlocks the cells and allows them to take in the sugar (ie glucose) and turn it into or store it as energy to use in the future.  Without insulin (made by your pancreas or by supplemental shots) it is not possible to change the nutrients into energy.  Basically put.  Without insulin, sugar builds up in your blood which wrecks your blood vessels and does some other nasty stuff.

So… back to the test.  After they draw a fasting blood glucose level, they hand you a bottle of this sickening sweet drink that is like a flat orange soda with a little extra sugar added.  If they are nice enough, they will have refridgerated it for you which helps it go down a lot easier.  (Ooh! If you are going for this test you could make a funny out of it and bring in a swirly straw and a drink umbrella!!!  Bet the nurses would be a little nicer when they stick you for blood! Wish I would have thought about that before! hehe!)  Back to the matter…  I have heard a lot of folks complain about how sweet that drink is.  But to me, when my body wasn’t absorbing enough energy from (not enough insulin to do so) I craved sweets and other carbs night and day, the warm flat sugary soda tasted so yummy.  For those of you number crunchers, the “soda” has 75 grams of carbs in it.  Regular orange soda has 35 grams in one cup… so it really isn’t much sweeter than two cups of the real thing.

At 30 minute intervals they test the level of sugar in your blood until the 2-hour mark.  They should be able to tell you right then and there what the number is.  I stole the following data off of the American Diabetes Association website it is in reference for ANYone testing for diabetes, no matter what Type (and are also used for the diagnosis of CFRD):

Fasting Levels:
Normal Fasting <100 mg/dl (mg/dl is the unit measure used in the US and what would be shown on your fingerstick meter if you are using one)
Pre-diabetes Fasting <125 mg/dl
Diabetes diagnosis Fasting >126 mg/dl
For me, I was above 126 fasting, so we already knew at that point I was screwed.

At the two-hour mark:
Normal <140 mg/dl
Pre-diabetes 140 to 199 mg/dl
Diabetes diagnosis 200+ mg/dl  (which I hit at the first 30 minute mark)

If you really are concerned and your doctor is not listening to you, you could try the test at home if you have a meter and some decaffeinated soda (doesn’t have to be orange flavor, I would prefer grape or strawberry… ooh! or Squirt!).  Make sure you do the test in the morning though because your body makes natural steroids throughout the day which will affect your numbers.  But still, if you do the test at home, it is not an official diagnosis, but it may put your mind at ease if it’s negative and you have been worrying.  Oh! And make sure you are not taking steroids or sick.  Those two can really throw off your results.

I have been quite frustrated and disillusioned by what some of my fellow cystics have said to me.  They have shown interest in getting the test done because they are showing signs of CFRD and they want to take a proactive role in taking care of their health.  Some of their doctors say, “nah, you don’t really need it” or “go to your primary care physicain”… do these doctors have no clue in how untreated diabetes affects your health? especially your CF health?!!  I just want to shake those doctors.  It’s a simple test which could save someone a lot of pain and suffering.  Untreated and uncontrolled diabetes makes you MUCH more prone to infection, which is a cystic’s worst nightmare!  Not to mention all the other crud that comes along with it….  Come on doc’s get with the program and TEST YOUR PATIENTS!  Personally, I go with the CFF (Cystic Fibrosis Foundation) guidelines as a baseline, more can be done, but less is just irresponsible. The CFF suggests that anyone (with CF of course) who is pancreatic insufficient (takes enzymes) be tested (via OGTT) every year after the age of 12 if they show signs or symptoms.  Some docs think the A1C test is enough… but I’ll get into that later.  Next post will be about the A1C test.

Hmmm… well I think that sums up the oral glucose tolerance test.  Any questions?

I’ve had a weird tingly feeling in my legs in the evenings for years now, and finally brought it up to my CFRD doc.  Turns out it could be neuropathy (nerve damage pain) which for me was caused by years of not really caring about my diabetes.  Apparently a simple treatment for the discomfort exists, over-the-counter capsaicin cream.  Yep, it is a cream made with the burnin’ hot oil that comes from hot peppers!  Who would have guessed!  I have been a bit nervous to try it.  I still have flashbacks of an old guy friend of mine who… ummmm… wasn’t so careful after cutting up peppers for salsa then went to the little boy’s room… let’s just say it wasn’t his eyes that were hurting, but many tears fell that night.  DO NOT TOUCH SENSITIVE SPOTS AFTER TOUCHING HOT PEPPERS!

My legs were super creepy crawly, driving me crazy.   The feeling is always worse when my blood sugars are bad, which they are right now thanks to the lovely Prednisone and a lack of continuous glucose monitor sensors (my refill order has been sitting on someone’s desk for the past few months, no explaination why except it is not the fault of my insurance).  I finally talked myself into giving the capsaicin cream a try.  Tried a little dab… nothing…. rubbed more in… eh, it kind of took the tingling away, a little… my feet felt like they were lathered in regular ol’ body lotion.  No cooling sensation, no burning… nothing special.  Reading the lable it sounded like it was supposed to feel like icy’hot.  Brodie, his little inquisitive doggy mind, oh boy… When I wasn’t paying attention I felt the slightest lick of his tongue on my feet.  I would have loved to see how big my eyes got when I felt that!  I was afraid his little tongue would fall off or something… I mean, what would I do if it burnt his tongue?!  then… nothing.  lick… lick…  Didn’t even faze him.  Strange… was I just duped into buying into a placebo?

The next morning when i woke up my feet were on FIRE!! Holy smoke!  Turns out that it was a bit much for my super sensitive skin.  At least I know it wasn’t just plain lotion now.  I think I will give it another try sometime possibly soon and let you know how it goes.  Definitely, I will be using much less next time.

Target values from the American Diabetes Association (ADA)/American Association of Clinical Endocrinologists (AACE)

Fasting/before-meal glucose: 90 mg/dL to 130 mg/dL (5.0 mmol/L to 7.2 mmol/L) (ADA);
<110 mg/dL (6.1 mmol/L) (AACE)

2-hour after-meal glucose: <180 mg/dL (<10 mmol/L) (ADA); <140 mg/dL (AACE) (<7.7 mmol/L) (AACE)

A1C: ?7.0%(ADA);?6.5%

The chart below provides the ADA recommendations for glucose levels in children. This year the A1C recommendation for adolescents and young adults has been lowered from 8.0 last year to 7.5

Glucose goals vary by age group because children have a higher rate of “hypoglycemia unawareness” than adults.

Benefits of Improved Diabetes Control

• Reduced risk of high or low blood sugar levels (hyperglycemia/hypoglycamia)
• Improved sense of well-being
• Lower risk of complications

Having near-normal blood glucose reduces your long-term risk of:

• Retinal eye disease by 76%
• Nerve disease by 60%
• Kidney disease by 56%
• Heart disease by 42%

Infections due to decreased white blood cell count phagocystosis.

• Phagocystosis is the ability to encourage white blood cells to destroy bacteria.

Increased viscosity of mucus secretions with hyperglycemia and dehydration.

• Dehydration is caused by the body trying to flush the excess blood glucose out in the urine.

Increased protein catabolism with CF and diabetes mellitus.

• Protein catabolism is the breakdown of proteins into amino acids and simple derivative compounds, for transport into the cell.

Increased fatigue with poorly controlled diabetes mellitus.

Delta F508 (the most common genetic defect in Cystic Fibrosis) homozygous genotype is associated with pancreatic insufficiency in nearly all patients.

This genotype is also at higher risk for CFRD.

• Insulin Deficiency
  • Insulin is an anabolic hormone which promotes conservation of body protein, fat and carbohydrate stores.
• Malnutrition and protein catabolism are clearly associated with death in CF.

After two years of insulin therapy,weight returned to levels seen six years earlier and the decline in pulmonary function stabilized.

This suggests a cause and effect relationship between clinical decline and the pre-diabetic state.

Lanng, Diabetic mellitus in Cystic Fibrosis: effect of insulin therapy on lung function and infections.

Lanng, Influence of the development of diabetes mellitus on clinical status in patients with Cystic Fibrosis.

Clinical data was collected at the Minnesota CF Center between 1987 – 2002 from 1,081 Cystic patients with 123 patients having CFRD.

“CONCLUSIONS—Female subjects with CFRD have a remarkably poorer prognosis compared with all male subjects with CF and female subjects with CF but without diabetes. The etiology of this sex difference is not clear.”

If you want to dive into the details, click here for the study.