Thursday, January 3, 2013

CFRD Follow Up

1/3/13 - See this post for the first part of the story

I had an appointment with an Endocrinologist today at a clinic closer to home. I thought it would be a good idea to get the opinion of someone a little closer (45 minutes away instead of 4 hours away where my CF clinic is). Well, the problem with that is their specialty is diabetes, not CF related diabetes...
I was a little frustrated because the first doctor couldn't find my latest Glucose Tolerance Test (GTT) results, which made me think she had no idea about me before even coming in. Then while she was searching the computer for the results, she asked me if I had any medical problems...uh yeah...which then confirmed that she knew nothing about me before coming into the room -- that just annoyed me. Anyway, she said that my A1c - don't know what it stands for, but I know its about your blood glucose - was 5.5. I was always under the impression that I wanted to keep that under 6, so I felt that was good news. When I asked the doctor about this, she said that the "normal range" is somewhere between 4.8 - 5.2 or something like that, so mine was slightly elevated which means I'm "pre-diabetic". Okay, great, no diabetes - wrong. Then she said that since my fasting blood sugar was 219 last time, and its supposed to be between 140-160, that means that I'm diabetic.

So, I'm under the impression that I'm just borderline diabetic?? They weren't very clear.

Either way, the first doctor wanted to do a physical exam (check neck, stomach, listen to my lungs, etc) and was surprised by my stomach scars and made a comment about my clubbing. I don't think she's ever dealt with a CF patient before... She told me that they'll probably start me on Metformin to help regulate everything and have me start checking my blood sugars at home. When I told her that I already talked to my CF doctor and she told me Metformin usually doesn't work for CF patients, the Endo pretty much ignored me and said that we'll try it anyway. She said, "Well you take oral antibiotics and those work? So we'll just give this a try." I just smiled and nodded.
I'm not trying to be rude, but I just don't like being seen by people who have no idea about CF or CFRD. This is something completely new to me and I just wish they had some CF background! 

Try and get that ridiculous song
out of your head now! :)
She then left and came back with another Endo who basically said the same thing. Since my 2 hour fasting blood sugar was so high, I'm considered diabetic. He would like me to get retested (good! - not sarcastic) to make sure this wasn't just one abnormal test, but he did say that the next test will probably come back abnormal, too. So, while I'm waiting to get my next GTT, I have to check my blood sugars twice a day, everyday. The nurse then came in with my new medical equipment, which you may recognize: Accu Chek Nano. The nurse did an awesome job showing me how to use my new friend and told me that she liked this one much better than another one she showed me because "its sexier".... Again, I just smiled and nodded. Haha!

These Endos want me to check my blood sugar twice a day, everyday and fax them the results after about 4 weeks. They also want me to get re-tested and follow up with them in April.

My plan: I'm going to check my blood sugar twice a day, everyday, until my appointment with the Endo from University of Chicago in a few weeks. This will hopefully give me and the U of C Endo more information about my daily sugars. I'm also going to schedule my next GTT as soon as possible (fingers crossed that I can get it at U of C on the day of my appts -- that's wishful thinking!). We'll see what my CF doctor and the Endocrinologist say in a few weeks...but I see this Accu Chek and I becoming close friends...


  1. Definitely, DEFINITELY see an endo who is familiar with CFRD. From what I've heard, CFRD is quite different and much less predictable than normal diabetes, and a1c is not always a good measure for a CFer. Good luck!

    1. I completely agree with you! I'm interested to see what the Endo at University of Chicago says -- I'll be taking his/her advice much more seriously.

  2. Hi Colleen,
    I highly suggest you find a new Endo who is familiar with CFRD. You may know this already, but CFRD is in a class all by itself - you cannot classify it as Type 1 or Type 2. Oral drugs do not work for CFRD, because the absorption of food and insulin is different every time we eat/drink, so you cannot have a pill for standardized treatment when each time we eat, our systems are not standard. Did you read the wikipedia about Metformin ( It just doesn't seem like the right drug to me...

    Have you read the guidelines the CFF put out? I find it very helpful. One thing stands out to me, "The available data suggest that oral agents are not as effective as insulin in CFRD. Four studies (with a total of 153 participants) compared oral hypoglycemic therapy with insulin therapy in CFRD". Here is the article:

    Second, an A1c of 5.5 is AWESOME!!!!!!!!!!! My doctor wants to get me under 7, so a 5.5 is great!! You are in this strange phase where you may have high blood sugars sometimes, but you are not ready for steady insulin treatment. This is a hard phase to navigate and you really need a good doc. I would try to find a different endo, and maybe before making an appt, try to speak w/ the doc shortly and ask their experience w/ CFRD so you're not going to all these docs and you just have the same experience as the first doctor.

    I wish you luck and I hope you will be able to find a doctor more familiar w/ CFRD!

    1. Hi Laura!
      First of all, I appreciate you taking the time during your recovery to comment on my blog! I've been following your blog and progress on Facebook, and I hope that your pain keeps going down and that you're able to stand the hospital food! :)

      I agree with you, I think I'm borderline CFRD, not quite there yet. I also appreciate you sending me some information - that CFF article is very interesting. I'm looking forward to meeting the Endo at the University of Chicago in a couple weeks because he was recommended by my CF doctor, and I trust her opinion greatly.

      I wish you the best recovery! I'm so proud of how far you've already come! Go Laura!