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Stressed with diagnosis

Discussion in 'Ask A Question' started by Jamie1991Stables, May 22, 2019.

  1. Jamie1991Stables

    Jamie1991Stables · Member

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    Hi all,

    I don’t really post much on here but I’m just having one of those weeks where I feel like my diabetes is beating me and it’s been tough.

    I was diagnosed type 1 over three years ago. But after a couple of months of using novorapid & lantus I began having regular hypo’s. I had been exercising rather intensely, but my hba1c came back really low. The diabetic specialist said I was in the honeymoon phase and for over one year I wasn’t taking any medication at all. It was like my diabetes had gone. But, low and behold it did eventually return and one year ago I was put on metformin because the insulin was still giving me hypo’s, even in really small doses. The metformin gave me bad stomach aches and it turned out my hba1c had gone down again, better than a normal persons in fact! So I came off of medication again! I’d had the relevant tests to diagnose both types 1 & 2; c peptide, GAD, islet cells,
    Etc. There were no results to suggest type 1. But my height, age and weight didn’t suggest type 2. The doctors were stumped (they still are). Anyway; the diabetes has come back with a vengeance this year. My bloods have been rising, particularly from lunch time onwards. I’m now taking metformin, gliclazide AND Levimir injections and just feel poop most of the time, yet I still haven’t had that definitive diagnosis of “you’re a type 1”, or “it’s type 2”. I’ve had tests for LADA come back negative, you name it, I’ve had it done!
    It’s just so demoralising, even now... three years on.
    Anyway, sorry for the essay but I just felt that I had to share my experience, even if just to vent some of my anguish.
     
    • Hug Hug x 4
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  2. SB.25

    SB.25 Other · Well-Known Member

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    Hiya, sorry you feel so pants.

    I am also in the same boat of not having a clear diagnosis. I am currently waiting for my MODY test results to come back but on the probability calculator it said there was a 1 in 143 chance of this. Have you been referred for this test? Can you recall what your c peptide levels were?

    When you say yours levels are bad - what are they? Some on here would think I a 7 in bad but I’m quite happy with that lol!

    Hope you start to feel better soon!
     
  3. ert

    ert Type 1 · Well-Known Member

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    I am really sorry you're stressed. I like you, wish to have a clear diagnosis. My specialist calls me GAD - IA2 negative, low-insulin type 1. But that isn't the medical definition of type 1which is tied into an immune response. With low insulin, every day is tough. But I keep doing this without insulin because if he's wrong and I am a thin type 2, I could possibly reverse this.
     
  4. Jamie1991Stables

    Jamie1991Stables · Member

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    I’ve previously been tested for MODY and it came back negative. My bloods are all over the place at the moment. They’ve been rising between lunch and my evening meal and exercise hasn’t helped in lowering it, so I’ve resorted to increasing my night time insulin. Apparently I’m only on low units, I inject 12 units twice daily. The last c peptide test indicated I was producing low-normal amounts of insulin. The metformin / gliclazide combination hasn’t done anything, hence why I’m back on the insulin... albeit only a slow releasing one now.
     
    • Hug Hug x 1
  5. Jamie1991Stables

    Jamie1991Stables · Member

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    I initially thought I was a type 2 but due to the type 2 medication not really helping me I’m beginning to think I’m a type 1. Just all the tests I’ve had haven’t been able to confirm anything and the doctors are just playing a waiting game... but it’s been 3 years and I’m slowly running out of patience.
    I was hoping to reverse it too by diet and exercise but now I just feel lethargic and regularly get headaches and tummy ache.
     
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  6. SB.25

    SB.25 Other · Well-Known Member

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    I worry too that my MODY test will come back negative. However, I am lucky that unlike what you say you have experienced, I don’t get too many hypos and would not really feel comfortable changing my treatment when my insulin is working relatively well. I currently inject 16 units at night and then 1 unit per 10g of carbs.

    I hope your treatment gets sorted soon so that you start to feel better :)
     
  7. Daibell

    Daibell LADA · Master

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    Hi. Yes, it's possible you may have something like MODY or an unusual diabetes type. I worry that your medication doesn't seem to be being well managed by your team. For starters having Gliclazide together with insulin is unusual and I note you now only have Basal and not Bolus as well? Nothing wrong with just Basal as long as it works and the dose is right. When you were on Basal/Bolus did you carb-count? If you are in a T1 honeymoon then typically patients might be on Basal/Bolus but with low shots. These would increase as the honeymoon phase progressed. If you are in fact T2 then with the right low-carb diet the need for insulin might fade. I think the only real problem is whether your diabetes type is unusual? BTW there is no specific test for LADA. C-peptide is the most common and useful test and GAD might indicate if positive the cause (antibodies) of beta cell destruction.
     
  8. karen8967

    karen8967 Type 1 · Expert

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    Sending hugs jamie hope your sorted soon x
     
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