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C-peptide results show insulin production

Discussion in 'Parents of Children with Type 1' started by KatieJane'smom, Mar 19, 2010.

  1. KatieJane'smom

    KatieJane'smom Approved members

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    What does this mean, exactly? Our Trialnet coordinator called all excited that Katie Jane was still producing insulin - ON HER OWN. She had the placebo in the study she participated in so that didn't have any effect.

    Here are the numbers:

    First 6 months drastic drop from 4.6 to 2

    Next 6 months held steady at 2

    Next 6 months gradual decline to 1.5

    Now continues to hold steady at 1.5


    I guess I wasn't as excited about it as the coordinator thought I should be. She's had D now for 3 years and it seems like she requires a bunch of insulin so maybe I don't understand the big picture?

    She was in a study (that was headed by the same doc as that did the one out of Brazil) where they were trying to keep the pancreas producing some insulin - sort of a permanent honeymoon stage. But she only got the placebo so....

    Can anyone clear this up for me? I wasn't really impressed with 1.5, even though it is holding steady there, that still seems like a really low c-peptide???
     
  2. Mikker

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    I don't know if I can clear it up for you, but 1.5 is actually pretty decent 3 years out. Almost within "normal" range, but again... most single blood c-peptide tests are simply a "snapshot" of levels at that particular moment, and are generally do not accurately represent ongoing c-peptide responses.

    After three years though, anything approaching a max c-peptide level in ANY circumstance is reason to rejoice. You've obviously been very diligent, and wouldn't be surprised to learn that her A1C's have been extraordinary as well.

    I think it has been well established that the best thing that can be done to preserve beta cell production, in most cases, is to maintain tight bg level control.

    Kudos~~
     
  3. funnygrl

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    I had a c-peptide done about 4 years out- it was 0.3. 1.5 is quite impressive. I'm not sure the lab values are the same, but the low normal on my lab was 0.8.

    Was the level done fasting?
     
  4. KatieJane'smom

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    Yes, it is always done fasting. They have done a C-peptide every 3 months for the past 3 years. Now it will only be every 6 months.

    Her A1C is nothing to write home about. Over the past 3 years it has always been in the 7's.

    Thanks for explaining it a little bit. I didn't really know what the ranges were.

    I guess I understand why the coordinator was excited. I think she was just shocked that this was without the trial drug. The coordinators don't find out until the end of the study who received the placebo and who received the real thing.
     
  5. jilmarie

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    Do you get a report from the lab? Is there a reference range listed or do you have units for the levels? At the lab I use 1.5 is in the normal range.
     
  6. KatieJane'smom

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    Here is the chart the Trialnet coordinator sent. I'm assuming the line is the cut-off. DD could not continue participating in the study if she was below that line.

    [​IMG]
     
  7. Christopher

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    Just curious, why wouldn't you talk to the nurses/doctors who are running this study to answer this question?
     
  8. KatieJane'smom

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    I did talk to the coordinator over the phone but my dd's next appt. for Trialnet is not until June. I will have an opportunity to talk to the dr. then. I'm sure I could call and have the dr. call back but I would rather talk to him in person and it didn't seem like an important thing to bother him about with a call.
     
  9. wilf

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    What it can mean is that the D may be easier to manage while the body is still helping out. On the other hand, in some people any contribution from the body is so random that it hinders more than helps the D management.

    My guess is that esp. when you string together a few days of good numbers it will make it easier to keep her in range for awhile.. :cwds:
     
  10. deafmack

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    Yes, that is interesting to say the least. I believe it was Richard157 that was in the study of people with diabetes for 50 plus years by Joslin and I think they found all of the participants still producing insulin, but it was not enough to make the insulin produced of any use. KWIM
     
  11. Toni

    Toni Banned

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    Wow! This is exciting news. I hope they all still produce insulin and the antibodies kill of the beta cells immediately; rather than there just being no more beta cell production. Since C-Peptide tests are not given yearly, hard to find if this is true. It may be! P.S. Very happy for Katie Jane and maybe their records are mixed up and she did not get the placebo but the drug. That's the only other possibility I can think of.
     
  12. KatieJane'smom

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    That thought did cross my mind but we knew pretty much from the beginning that she got the placebo because every other single person had an allergic reaction even though they took benadryl and Katie Jane refused the benadryl and still did not have any reaction at all. Plus, they are very meticulous with record keeping so I'm confindent the results are not mixed up.

    I think the C-peptides are pretty accurate in her case just because they were taken every three months and the numbers didn't change much.

    I agree, though, it's probably not enough insulin to do much but I do like to hope it will help us keep her more stable through these crazy, hormonal teen years.
     
  13. Toni

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    The grandma we know with Type 1 is on 10 units a day basal (she is tiny; guestimating 100 pounds, maybe a little more). Type 1, dx'd at 5 years. Some people probably always produce some insulin? Or that theory (hope it's that). This is good news.
     
  14. Meghan'smom

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    There is a family friend of my mom's that was diagnosed at age 17 and is now 52 and her endo did a c-peptide a few months ago and it showed she was still producing insulin. I honestly didn't think that could be true and thought maybe she misunderstood but I guess it can be.
     

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