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Misdiagnosed as Type 1

Discussion in 'Greetings and Introductions' started by michelle88, Feb 20, 2014.

  1. michelle88

    michelle88 LADA · Well-Known Member

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    Hi everyone

    I was diagnosed with T1 in November 2011 after 9 months of steadily losing weight (11 kg over 9 months), having no energy, always being thirsty and going to the loo all the time. My BG level at diagnosis was 22 mmol with an HbA1c of a shocking 14.1. My diet pre-diagnosis consisted of carbs, carbs, and more carbs (pasta and rice mostly). Since I'm in my thirties and slim, my GP told me I definitely have T1 and had to go on insulin straightaway. Needless to say I was devastated. Over the next few months I was on MDI, but my TDD was only around 10 units or even less. After a few months I got my HbA1C down to 5.8. My GP said it was the honeymoon syndrome. Out of curiosity I asked my GP if she could test antibodies in my blood (because I was still very skeptical about the T1 diagnosis), and surprisingly the test showed no antibodies present. According to my GP, only around 10% of T1s don't show any antibodies. Fast forward a few months later, I became pregnant and in March last year gave birth to a healthy baby boy weighing 7 lbs, not at all a "diabetic baby". My insulin needs during pregnancy doubled only during the last trimester, during the first and second I needed even less insulin than before pregnancy. I had a battery of tests done during pregnancy, and again one test showed no antibodies present.

    My GP had by then referred me to an endocrinologist. Because I asked, this endo showed me all my blood test results done when I was diagnosed back in November 2011. What struck me was my C-peptide number - it was in the normal range, although on the lower end. My endo suggested doing another C-peptide test (this was a year and a half after diagnosis), and the result was slightly higher than the first test done at diagnosis. He then proposed an "experiment": going off insulin for 2 weeks, with me testing every morning and before each meal. My BG was in the normal range (between 3.7 and under 6 mmol) at all times. My endo then said to continue the experiment without insulin, but I was suspecting that even though my BG was fine before meals, it most probably was very high postprandial, and lo and behold, it was (up to 15 mmol). I told him I wanted to avoid those spikes (he said high blood sugars don't cause damage in the short run!!) and decided to go back to low doses of insulin. According to my endo, I was suffering from insulin resistance instead of an autoimmune disorder and he would prescribe me Metformin once I was done nursing. Bizarrely, he was hesitant to amend my diagnosis from T1 to T2, even though it was clear after all those tests I fit more in the T2 category. Doesn't insulin resistance define T2? He also said he could rule out MODY and LADA and that my family background (a lot of T2s on my mom's side, although both parents are non-diabetic) indicated a genetic predisposition to T2 but still, he wanted to be careful in declaring my initial diagnosis as a misdiagnosis. But to me, that's exactly what it is.

    As of now I am still nursing so I cannot yet take my Metformin. In order to manage BG spikes, I am again on insulin (TDD around 10 units).

    Has anyone experienced a diabetes misdiagnosis or know of someone who has? Would love to hear from you.

    Michelle
     
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  2. Totto

    Totto Type 2 · Well-Known Member

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    I have similar bloods, perfectly normal generally but bg will rise dramatically if I eat carbs.

    I don't know this, but wouldn't a normal lowish C-peptide rule out insulin resistance? And what use did he think Metformin will be of, if you are not insulin resistant?

    How did he rule out MODY?

    It does seem this diabetes thing is so much more complicated that I ever could have guessed.
     
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  3. Daibell

    Daibell LADA · Master

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    Totto. As a side issue Metformin is often prescribed with insulin as it makes a small (very small?) difference still to blood sugar. Some research results have shown this.
     
  4. mo1905

    mo1905 Type 1 · BANNED

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    I think if you read through these forums misdiagnosis is very common. Trouble is, some of the tests involved for a proper diagnosis are fairly expensive and so many docs are loathe to promote them. Sad but true. As for metformin, I am T1 on insulin and also take this drug. I was told it improves insulin sensitivity.
     
  5. michelle88

    michelle88 LADA · Well-Known Member

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    Hi Totto

    I know, diabetes is so very complicated! Well my endo says I suffer from insulin resistance which is why he put me on Metformin, but I don't know yet how Met will affect my levels because I'm still nursing.

    I just find it strange how he refuses to put me in any category, whether T1, T2, MODY or LADA. He prefers calling me "insulin resistant". Doesn't that equal T2? And given my family background (several T2s, no known T1 or anything else), doesn't that point to T2 as well? He rules out MODY as it's very rare and people who do have it get it when they're around 25. I was 33 when diagnosed.

    My last HbA1c was 6.0 (42 mmol/mol in new money) back in November 2013 but I want to get it down in the 5's again.
     
  6. hale710

    hale710 Type 1 · Well-Known Member

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    Didn't realise you were still on the metformin!


    Blogging at drivendiabetic.wordpress.com
     
  7. mo1905

    mo1905 Type 1 · BANNED

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    'Fraid so, my little white M&M's I like to call them !
     
  8. Alanp35

    Alanp35 Type 1 · Well-Known Member

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    Same here Mo. Metformin helps the liver manage insulin et al.



    Sent from the Diabetes Forum App
     
  9. phoenix

    phoenix Type 1 · Expert

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    (Obviously your endo knows you and your medical history. I've certainly read of people over the age of 35 being diagnosed with MODY (sometimes parents have been diagnosed with T2 and it later transpires that they have MODY when their children are diagnosed). I suspect we read of more cases on forums because people with 'strange' conditions are perhaps more likely to seek more information because it's not readily available.
    All MODY types are rare but they are becoming more recognised so may not be quite as rare as previously thought.
    There are lots of different MODY types, I think these three are the most common.
    HNFIA (MODY 3) is the most common type and you are most likely to develop it before 25 but can also develop at much later ages.
    MODY 1 caused by a mutation in the HNF4A gene allows enough insulin to be produced in early childhood but this gradually reduces .The Exeter research group says
    MODY 2( Glucokinase ) is a type that causes mildly elevated glucose throughout life and may often only be discovered on routine tests.(often during pregnancy)

    There is a MODY probability calculator of the Exeter website. It hasn't been properly validated but it might give an indication of any likelihood of having MODY.
    http://www.diabetesgenes.org/content/mody-probability-calculator

    But of course T2 also covers lots of different phenotypes (ie overweight, underweight, more insulin resistant, more insulin deficient) and has so far been associated with numerous genes (I think about 40 upwards so far) Unlike MODY it's probably a result of combinations of genes. The heritability of T2 ranges from 30-70% depending on study and the genes studied. It seems to be more heritable in some ethnic groups than others . It's hard fro researchers to calculate the heritability because families share not only genes but environment.

    Lots of info, some general, some very technical on the genetics of T1, T2 and MODY (but it is quite old and discoveries are being made all the time in this rapidly changing field.
    http://www.who.int/genomics/about/Diabetis-fin.pdf
     
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  10. Daibell

    Daibell LADA · Master

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    As others have said, mis-diagnosis is very common and life is more complex than just the two main types T1 & T2. In some ways the correct formal diagnosis is less important than having the right treatment and understanding with the GP or DN. It is important. however, for research purposes. Yes insulin resistance implies a T2 and the treatment will normally be diet and Metformin for starters. In my experience and others on the forum GPs sometimes prescribe the 'wrong' tablets if the diagnosis is wrong and for LADAs like me insulin can be prescribed too late. Also being told to lose weight by a GP when you are already thin as a mis-diagnosed 'T2' is particularly annoying. Sadly I don't expect much improvement due to inadequate GP training, money and time to keep up to date. Most GPs and DNs are overworked.
     
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  11. michelle88

    michelle88 LADA · Well-Known Member

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    I know misdiagnosis is common but how common is it to be diagnosed T1 when you're not? Usually adult T1's are misdiagnosed as T2.
     
  12. michelle88

    michelle88 LADA · Well-Known Member

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    phoenix, thanks so much for the links. I calculated my MODY probability and apparently I have "a 1 in 142.9 chance or lower for testing positive for MODY." Not extremely high then :rolleyes:

    I believe so too that T2 seems to be more heritable in some ethnic groups. My mum's family (lots of T2s) is from the Philippines, and aren't Asians more susceptible to T2...
     
  13. Pao wow

    Pao wow Type 2 · Member

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    They just guessed My type. Because I'm 37 must be type 2 !
     
  14. Tar811

    Tar811 Type 2 · Member

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    They think I have MODY - my Hbc1a(?!) was 78.
    I have just done the predictor tool and my probability is 1 in 21 that I will have MODY. This sounds pretty high stats?!


    Sent from the Diabetes Forum App
     
  15. michelle88

    michelle88 LADA · Well-Known Member

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    It's possible to get Type 1 or 2 at any age. Provided you can have the antibodies test (e.g. GAD) done, then you'll know with more certainty if you have Type 1 or not. Hope you find out soon! It's frustrating not knowing what kind of diabetes you have.
     
  16. michelle88

    michelle88 LADA · Well-Known Member

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    That does sound pretty high! Have you had an antibody test done (GAD) to see if you're autoimmune Type 1?
     
  17. Gina G

    Gina G · Active Member

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    Hi Michelle
    Yes son exactly the same, slim 30 years old, thirsty and BG was 17. Diagnosed back in March type 1
    Gave him 10 units of insulin to take nightly this made his BG too low they then reduced to 6 still too low now he takes no insulin after that first week, he watches his diet low carbs but eats normal, his sugars are between 3.5 - 6.5 everyday
    Excercises as mush as he can, bikes on a weekend
    He has had test done GAD antibody, C-Peptide and 1-A2 all negative but positive the T8N1 Zinc Transporter test which indicates type1
    He is carrying on as he is, they say it could be honeymoon period
     
  18. michelle88

    michelle88 LADA · Well-Known Member

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    Hi Gina! It does seem like your son is currently honeymooning and I hope it's a long honeymoon! My antibody tests were all negative but the GAD test is still missing and maybe someday I'll get around to testing that. My insulin needs have crept up over the years, I'm now around 30 units per day, both Novorapid and Levemir. That COULD indicate that I have Type 1 or LADA. It's strange though, because all my relatives who have diabetes have Type 2. But I've learned to live with it either way and hope to have good A1C's throughout my life!
     
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  19. Alexandra100

    Alexandra100 Prefer not to say · Well-Known Member

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    Have you tried the "experiment" of eating reduced carbs and checking your post prandial bgs?
     
  20. Resurgam

    Resurgam Type 2 (in remission!) · Expert

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    A lifelong friend of my brother in law was told he was type one and prescribed insulin. He was a lorry driver with a family and he lost everything - job, house, family - even contact with his children. He did not stay in touch with friends though my sister mentioned they'd seen him from time to time, as he'd been best man at their wedding, but that he was constantly having hypos and 'was not the same person'.
    When the consultant at the hospital retired and he saw a new one he got a phone call shortly afterwards to tell him to stop taking the insulin as he was not type one and never had been.
    He turned up at my sisters in a terrible state - very distressed by all that he'd lost. I have asked about him a couple of times, but it seems that he's vanished from the area.
     
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