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no MODY for me

Discussion in 'MODY' started by kierbabi09, Oct 22, 2008.

  1. kierbabi09

    kierbabi09 Approved members

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    my test was negitive. SO i'm calling myself type 1 instead.
     
  2. sofaraway

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    thats a shame that we losing you Kier, did they run the test for all MODY genes? I know sometimes they just do the 2 most common here first.
    At least you are on the right treatment now and doing better on insulin.
     
  3. kierbabi09

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    Thanks!
    I have no idea what genes they tested but I think they tested all of them.
    So...I'm back to square one, trying to figure things out!
     
  4. sofaraway

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    well you obviously have diabetes that requires insulin treatment, So i guess insulin dependent diabetes is what you could call it. I often describe my diabetes like that, it's most easily understood by people.
     
  5. Alba37

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    Aw Kiersten, just read your news! I had been checking the other thread :eek:

    I'm really sorry you got a negative result. I know how frustrated Marc is not knowing, it must be so hard. I think it's just feels slightly better to know exactly what we have. Still no news on when he's getting his tests, but when he does I wouldn't be surprised if he's negative too and like you there is no real diagnosis. All his origional tests came back inconclusive for Type 1 & Type 2! He had more tests and we get these results back next week.

    Take care Kiersten,

    A x
     
  6. kierbabi09

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    Thank you:)
    Atleast I know someone else is out there and weathering like Iam, you know?
    I hope that you get some answer's too. It's so hard not knowing, to be honest. Good Luck!
     
  7. Alba37

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    Yes, I really do know Kiersten. From what I've been reading it seems there may be many other genes (not yet discovered) causing diabetes. Hopefully one day, in the not too distant future, you will get answers.

    Take care

    A x
     
  8. C6H12O6

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    I’ve been following a number of the MODY conversations, and I am left with the burning question of what would change if you knew what kind of diabetes you have? I am curious more than anything because I don’t know if you mentioned what you believe it will change for you.
     
  9. Alba37

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    I can only guess that each time a doctor huffs and puffs and says he's not responding to treatment like he'd expect, it would be good to have an answer.

    The last 2 years have been trial & error and Marc is worried he's not on appropriate treatment for his diabetes. It's also easier to say I have T1, T2 or MODY etc, than saying your undiagnosed.

    Not sure, that answers your question? If not please ask anything else.

    A
     
  10. kierbabi09

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    It doesn't change anything, not in the way that I would treat my diabetes, but...it would give me peace of mind if I knew. The last three years have been so...hectic i guess you could say.
    To answer your question it would not change anything...it would just make me feel better I guess.
     
  11. C6H12O6

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    Kiersten, I will make a point of explaining in more in detail soon but I was / still sort of am in a very similar situation to you. I have had diabetes for a little more than 7 years and been on a pump for a little more than 3 years.
    Since going on a pump I have learned that I can get ketones fairly easily, I have for various reasons had infusion sets go bad, pumps malfunction etc. the result was no insulin being delivered over the course of hours, resulting in bg’s such as HI off the meter, high urine ketones – maximum darkness of the strip, and blood ketones at a level of less than 2mmol/l – which the precision xtra manual states is not a dangerous level. I obviously think if when my insulin is cut off completely, my body cannot even metabolize enough glucose to meet my body’s needs (especially given than I was asleep) and resort to fat breakdown that I have type 1 diabetes.
    If a typical type 1 were to experience some kind of crisis and stop taking insulin for several days, it would take them longer to become ketonic according to my understanding because the basal insulin’s tend stay in the system longer than the every 12 or 24 hours they are dosed, I think this was more true of older basal insulin’s like nph, lente, ultralente, and may be less true of lantus, and levimir. In contrast, I am sure many pumpers could tell you of instances when infusion sets were obstructed, and ketones were the result. You obviously can’t safely test whether you will develop ketones by omitting insulin, but with the pump insulin not being delivered properly is occasionally a downside of pumping.

    The term ketosis prone diabetes used to be one of the names given to type 1. The term is now one of several outdated terms for type 1, juvenile diabetes being another technically outdated term. I do actually think it is a sensible term. I think type 1 should be defined as someone who requires exogenous insulin to sustain his or her living. Meaning without insulin they would develop ketoacidosis, and without intervention die fairly soon after stopping insulin.

    It is a common misconception that when a type II diabetic is prescribed insulin after years of managing on oral meds, they become type I. Even some health care professionals, including some doctors believe this.) Requiring insulin to stave off horrific long-term complications, which may even culminate in death, is not the same as requiring insulin to maintain homeostasis and remain alive.

    If you are in transition to becoming so that going with out insulin will cause your blood sugar to become very, high and you to develop ketones I would say that you have type I diabetes but it is latent right now. I know they question of LADA has come up, but I don’t think you should get caught up on the of adulthood part.

    I really hate to say it but just seeing what would occur ketones wise if you were deprived of insulin would tell you way more than those 5000.00 $ worth of tests did. Obviously I can’t condone you testing this theory out.
     
  12. C6H12O6

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    Kiersten, do you take oral medication for diabetes at all. Do you know how about how many units of insulin you take per kilogram you weigh? That is also very valuable information.

    It sounds like from something you said in another post that you have PCOS; I think it said you take birth control pills because one of your hormone levels is out of range. Usually with PCOS more than just DHEA-sulfate is out of range, but it can also be just DHEA-sulfate that is out of range.

    If you do have PCOS, I can see why your doctor might be confused about your diagnosis, but you can definitely have type 1 diabetes and PCOS.
     
  13. kierbabi09

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    I used to take prandin but it didn't work, no matter how much I took.
    I take about 35-40 units/day and I weigh about 42 kg, I think.
    Yes, I think I DO have PCOS. I had a blood test about 2 years ago to check for all my hormones and I have too much of a hormone (can't remember which one, sorry).
    All I know is that I am so confused right now. I guess all I want is an answer.
     
  14. C6H12O6

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    Maybe just try and focus on getting on the pump and making that a success, in a few years maybe you should ask to have your c-peptide and antibodies tested again, to see if there are any changes.
     
  15. hypercarmona

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    I know what you mean. No MODY for me either (as far as I know), but my diabetes is strange, to say the least. It would be nice to have the relief of knowing definitively what is going on, even if it doesn't really mean much in the long run to anyone but me.

    I've never been one to tolerate secrets being kept from me, and that is what not knowing feels like sometimes. :eek: I hope that you're eventually able to get your answer. :cwds:
     
  16. sofaraway

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    I know your question wasn't aimed at me but I thought I'd answer anyway. For some people if they were mis-diagnosed as type 1 (or not given a type but put on insulin) they could possibly change to oral meds

    http://findarticles.com/p/articles/mi_m0MDR/is_1_8/ai_n6178372?tag=content;col1 as an example

    For me nothing changes because I have gone through the oral meds route and they became no longer effective. So insulin it is for me.

    If I don't have insulin and my blood sugars become very high, over 30 I do not produce significant ketones. At my highest blood sugar of 35 I had 0.2 blood ketones. For people with MODY we generally don't get DKA with very high blood sugars. I don't know if I would be any more or less at risk of HONK than someone with type 2.

    I had a c-peptide done last week so will be interesting to see what it is, I don't believe that I've ever had one done before so there will be nothing to compare to.
     
  17. kierbabi09

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    Thank you. I try to. I'm really excited, so for now, just the fact that I'm getting a pump is enough for me.
    Hmm...maybe there is another kind of diabetes that nobody knows about yet?
    Maybe we have that type of D:p:)
     
  18. C6H12O6

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    It depends on why your blood sugar was 35 (630) if it was an insulin pump issue and you were not getting insulin then you should realistically have ketones. For an injection user the risk of going into DKA should be pretty low. If you look at the ask the diabetes team questions they restate over and over again to parents questioning why their child (often teen) has gone into DKA multiple times, or even 1 time they state that the most likely reason of a DKA is insulin omission and that parents needs to watch the injection take place carefully. There was a child who died of DKA and the mother was charged as being negligent in her death, (the story was highly publicized in the media). In that case the district attorney and the medical expert asserted that the child went for days at a time without receiving insulin.

    If you accept the definition of type 1 as ketosis prone diabetes, an encounter with complete insulin deprivation will give you your answer as to whether you have ketosis prone diabetes. If you use injections your chances of being in that situation are limited to somehow neglecting to take basal insulin for at least 2 days.
     
  19. sofaraway

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    That 35 blood sugar was prior to starting on insulin, when I was using oral meds only. Does that make it clearer? Having MODY means I do not have ketosis prone diabetes as you describe it.
     

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