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I have my Mody diagnosis at last!

Discussion in 'Newly Diagnosed' started by hisjen84, May 12, 2016.

  1. hisjen84

    hisjen84 Other · Well-Known Member

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    After a few months of waiting I finally have my mody results back. I apparently have a rare mutation that affects about 1 in 500,000. I would love to know if anybody else has this.
    It is a mutation in the abcc8 and kcnj11 which means very little to me but is referred to apparently as TNDM transient neonatal /later adult onset. Currently treated with gliclazide but may lead to insulin dependent
     
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  2. catherinecherub

    catherinecherub · Guest

    Nice to know that you now have confirmation @hisjen84.
    I wish you well for your future management and know that posters here will give you plenty of support.
     
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  3. janiebcarder

    janiebcarder · Member

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    WOULD YOU MIND MY ASKING WHAT YOUR SYMPTOMS WERE
     
  4. hisjen84

    hisjen84 Other · Well-Known Member

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    Hi yes sure, my biggest symptom was thirst I couldn't sleep through the night I was that thirsty, I lost about a stone in weight it's only because I was quite thin at 8.5 stone but tested negative for type 1 that they did the genetic testing and my cousin also has the same type of diabetes


    Sent from my iPhone using DCUK Forum mobile app
     
  5. Melanied9

    Melanied9 MODY · Newbie

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    Hey! Im MODY aswell! All the females in my family have it, mine is the hnf4a gene- I was on gliclazide but it was completely uncontrollable on that so for nearly a year now Ive been on insulin and Im soo grateful for it
     
  6. Tulip01

    Tulip01 Type 1 · Active Member

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    Im currently being treated with insulin as type 1 but im bout to be tested for MODY as lot of my family has a strnge form of type 1 that my consulnt thinks is MODY most likely xx
     
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  7. Chim

    Chim · Newbie

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    Hi

    My daughter who is 6 years old diagnosed T1D ,but her antibodies negative.so we wanted to check her gene and found KCNJ11 mutation.is this mody type? And wish to know r u still in medicine pills or in insulin therapy.my daughter is in insulin therapy and her bg goes lows often.
     
  8. SB.25

    SB.25 Other · Well-Known Member

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    Glad to see you have successfully got results. I’m awaiting for the test. Did it take you long to get the test done? I’ve been waiting for a month for the test so far and have chased but haven’t heard anything......

    Also did you have an incredibly high hba1c on diagnosis? Mine was 103. I’ve tested low for c peptide and negative for anti bodies. As my levels were still out of control I’m on both quick and slow acting insulin now.....

    I just want a correct diagnosis!!
     
  9. Chim

    Chim · Newbie

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  10. Juicyj

    Juicyj Type 1 · Expert
    Retired Moderator

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    Hello @Chim You are responding to a thread that's over 2 years old so it may be hard to get a response from any of the members who posted here. I can move your post to a new thread to gain better visibility, please let me know ?

    Newly diagnosed type 1 diabetics very often experience a 'honeymoon' phase when the pancreas is less stressed with insulin therapy and starts to produce some insulin again, it's misleading to think that type 1 was indeed the diagnosis at this point, however in time the pancreas will wear out and more insulin will be required, however in the meantime insulin injections need to be adjusted to avoid low/hypo episodes, so please keep good contact with your nurse/doctor to get insulin adjusted to avoid this.
     
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