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Type 1 Conflicting Diagnosis, New Possible Diabetic?

Discussion in 'Ask A Question' started by LondonC24, May 23, 2022.

  1. LondonC24

    LondonC24 · Member

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    Hi Guys,

    I visited my doctor last month for a problem, and they ran full bloods to full illnesses out before continuing investigations. I am 24, attend the gym and weight lift 5x week and eat well. I have no history of diabetes in my family, although my mum and sister have thyroid issues.

    My first HbA1C came back at 55 and then my second a few weeks later at 72. I was called by the drs who said they believed I had Type 1 Diabetes, and that based on my symptoms (dizziness, blurry vision, light headedness, shakiness etc), they wanted me to come in and do a ketone test to see if I was in DKA. I did the urine ketone dip and ketones were found, although my finger prick test at the time was normal. They sent me to A&E to check everything and give fluid if need be; my ketones were gone when they tested and my finger prick test was again normal, but the A&E Dr said I was definitely Type 1 diabetic, and referred me to the ambulatory clinic the next morning to start me on insulin.

    I attended the clinic, my ketones were normal, as were my finger prick test, they told me I was not diabetic at all, but that bigger people like me sometimes have high blood sugar (I'm a size 8-10)?? The Dr didn't even speak to me, it was the nurse who informed me of this, and said that the community diabetic nurse would be in touch (even though apparently I'm not diabetic?), and sent me away without any further investigation or meds.

    I woke this morning and did my finger prick test and was in hypo with a blood glucose of 3.8. I felt really shaky and dizzy and not well at all. I have contacted my GP who are going to speak to a senior and get back to me, but I am so confused and worried about this. Has anyone had anything similar? Does anyone know why some Drs think I'm diabetic and another one doesn't? Any advice or info would be great as I'm baffled!
     
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  2. Antje77

    Antje77 LADA · Moderator
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    A hba1c of 72 is definitely in the diabetic range, so I'm completely puzzled why you have been told you do not have diabetes. Can you call the clinic to ask?
     
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  3. Rokaab

    Rokaab Type 1 · Well-Known Member

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    Agree with @Antje77

    I'm also surprised how the A&E doctor would come to that conclusion so quickly of you being Type1 given your blood test was normal and there were no ketones, there are tests but they normally take longer to come back afaik

    FYI, afaik 3.8 is generally ok for a non-diabetic person or a diabetic not on blood glucose lowering drugs, diabetes does not cause hypos - the medication can do (there are also conditions that cause hypoglycaemia - but they are not diabetes)
     
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  4. LondonC24

    LondonC24 · Member

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    Thanks for your replies, I don't understand either! I have spoken to my GP (who said yes to diabetes) this morning and she is speaking with her senior for the next steps. Just feel I've been given a diagnosis, taken in all the information, and then been told there's nothing wrong with me and I'm fine!
     
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  5. LondonC24

    LondonC24 · Member

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    I think he made that assumption of the ketone level I has gone to A&E with and the HbA1Cs, but again, I am unsure, very confusing
     
  6. LondonC24

    LondonC24 · Member

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    I know don't know if I'm even being referred to the clinic after the last Dr said no to diabetes; I was told on Friday with the first diagnosis that it would be an urgent referral with contact made today, but now I'm even wondering if the referral will be made
     
  7. HSSS

    HSSS Type 2 · Expert

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    GP My first HbA1C came back at 55 and then my second a few weeks later at 72. (Diabetic numbers)
    did the urine ketone dip and ketones were found, although my finger prick test at the time was normal. (Keto or extremely low calorie diet? Otherwise confusing. Do you know the numbers on the ketone and fingerprick test? When and what did you last eat?)

    A&E to check everything and give fluid if need be; my ketones were gone when they tested and my finger prick test was again normal, but the A&E Dr said I was definitely Type 1 diabetic (type 1 based on what at this point? Again do you know ketone/bgl number? Had you eaten between this and GP tests as I assume it was the same day?)

    clinic, my ketones were normal, as were my finger prick test, they told me I was not diabetic at all (what did they say about hba1c? And again numbers?)



    so I just summarised your tests. You’re right this makes little sense.

    do you have any other conditions, particularly blood related ones that could render the hba1c inaccurate (though it seems a big jump even for that possibility)

    I’d keep monitoring in the meantime just in case you are type 1 - and any significant numbers especially if you feel at all unwell go to A&E again to be rechecked.
     
  8. LittleGreyCat

    LittleGreyCat Type 2 · Well-Known Member

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    Your higher reading HbA1c points to high blood glucose over a significant period.
    It measures 2-3 months, and so is not directly related to finger prick tests.

    If you were T1 then (assuming you are not on any medication) you would be seeing high BG which would not come down plus ketones if your body could not process the blood glucose for energy.

    Not being a Doctor I would be inclined to guess some variant of T2.

    Alternatively a dodgy laboratory test of your HbA1c.
    I would be inclined to ask for another HbA1c and go from there.
     
  9. LondonC24

    LondonC24 · Member

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    Hey, thanks for your reply. So I'm not on any low calorie/carb diet, and had eaten around 4/5 hours (some fruit slices and tuna and couscous) before due going straight from work to the drs, but had been drinking plenty of water all day. All I know is my ketones were 2+.

    The A&E Dr said Type 1 based on the HbA1C results, symptoms and my age/diet etc. They didn't tell me any of the ketone/bgl numbers at A&E. And I hadn't eaten, again just water as they told me not to eat.

    The clinic just said my HbA1C could be high because I'm 'bigger', even though I said I thought the numbers were quite high, but again they didn't tell me any ketone or bgl numbers, just that they were normal.

    That's my plan, they told me to go back to A&E if I had symptoms ie dizziness, nausea, blurry vision etc, and I said I'd be there everyday!
     
  10. HSSS

    HSSS Type 2 · Expert

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    I’d agree about the hba1c, other than a slim active 24yr old isn’t likely type 2. Maybe a MODY variety of which I know nothing other than they exist and behave differently to type 1 and 2
     
    • Informative Informative x 1
    #10 HSSS, May 23, 2022 at 1:11 PM
    Last edited: May 23, 2022
  11. Antje77

    Antje77 LADA · Moderator
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    Early T1 often behaves a lot like T2, especially in grown ups.
    Most of us are diagnosed before we ever develop ketones, it can take a long time before all beta cells have gone.
     
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  12. LondonC24

    LondonC24 · Member

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    I think because I'm not testing at home, I don't know if my BG is getting high or not, but yeah there were 2+ ketones when they did the first ketone test, so it's all very confusing!

    Okay, thank you, I'll speak to the Dr and see if that is something that could be possible.
     
  13. LondonC24

    LondonC24 · Member

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    I'll have a look into MODY, thank you!
     
  14. Antje77

    Antje77 LADA · Moderator
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    Can it be that the doctor who told you you aren't diabetic overlooked your hba1c?
     
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  15. HSSS

    HSSS Type 2 · Expert

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    Bigger? At size 8-10? Are they blind as well as daft? And even if it was true bigger doesn’t give higher levels unless you are also diabetic (and yes the two often go together but bigger doesn’t causes high levels without diabetes)

    in your shoes I’d want explanations of the high hba1c and the ketones even though the fingerpricks seems to mostly be normal. Something is off where that be in your body or the testing.
     
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  16. HSSS

    HSSS Type 2 · Expert

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    I thought you said you were testing at home (that’s how you found the 3.8 isn’t it?)
     
  17. Antje77

    Antje77 LADA · Moderator
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    MODY is diabetes caused by a single gene, it tends to run in families so without a family history of diabetes it's very unlikely.
     
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  18. LondonC24

    LondonC24 · Member

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    I'd only just bought the monitor yesterday after the days in hospital, so it was one of my first times testing at home
     
  19. LondonC24

    LondonC24 · Member

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    It upset me because I've always struggled with food so was not what I wanted to hear, just feel like they were ready to write it off and get me out tbh! Yes definitely, this is what I think I'm going to have to push for now
     
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  20. LondonC24

    LondonC24 · Member

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    They just put the results down to my size
     
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