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Misdiagnosed for 4 years

Discussion in 'Newly Diagnosed' started by StaceyEmma, May 17, 2019.

  1. StaceyEmma

    StaceyEmma · Well-Known Member

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    Some days 8/9 tests a day for driving safety but I didn’t think it was too often need to get more sorted tomorrow otherwise I’ll run out got loads of lancelets and needles (although 4 of them a day now was originally one a day and only given 100 of these too)
     
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  2. Marie 2

    Marie 2 LADA · Well-Known Member

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    @ I'm sorry StaceyEmma, it's a very unknown world to start. I remember how frustrating it was to not know everything I needed to know at the beginning and to have so many questions.Testing to know your sugars often at the beginning is the first start. A CGM is by far the easiest way if you can get one.

    It is a learning experience, but once you have it down it will be so much easier.
     
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  3. EllieM

    EllieM Type 1 · Well-Known Member

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    Yes, testing before you get behind the wheel is a good habit to get in even if you're in a country where it isn't a legal requirement (it is required in the UK).

    It is, but be aware that some people don't get reliable results from them, so don't relax the blood testing till you fell confident that the cgm gives good results.
     
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  4. StaceyEmma

    StaceyEmma · Well-Known Member

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    CGM?
     
  5. StaceyEmma

    StaceyEmma · Well-Known Member

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    Yeah I’m in the north east of England so legally have to test before driving. Already let the DVLA know too.



    CGM?
     
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  6. Marie 2

    Marie 2 LADA · Well-Known Member

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    Sorry a CGM is a constant glucose monitor. You apply them and they stay on you to monitor 24/7. You literally don't have to do very many finger pricks...................for days in some cases because you look at a screen and read your blood sugar level. 50 times a day if you want.

    I am in the US and as a type 1 diabetic with insurance you pretty much qualify to get one, at different costs. I believe the UK it can vary which area you live in and what kind of control you have to qualify. Some people self fund.

    Someone in the UK will be able to tell you more about that,
     
  7. StaceyEmma

    StaceyEmma · Well-Known Member

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    Ahh I see. May mention it at my nurse appointment on Friday although already know she’ll say ask a dr or the consultant.
     
  8. StaceyEmma

    StaceyEmma · Well-Known Member

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    Confused by the letter sent from my consultant-just arrived this morning. I know hbA1c and cholesterol but confused by what the others mean can anyone shine some light?

    March 19 hba1c- 53 mmol
    EGFR >90
    U+E (no idea what this is) -normal
    Cholesterol 4.4mmol
    TSH- 0.67mlu
    Islet cell antibody screen -negative.
    IA-2 antibodies <10 IU
    Anti-GAD 65 antibody 217.7 IU/ml
    Zinc transporter 8 antibody-77.5 U/ml
    C-peptide 1540 pmol/L
    BMI 32kg/m2

    Also is it normal for consultants to not listen when being given information. He’s put my maternal grandmother (should be grandfather)
    Should also only be paternal grandmother siblings yet he’s put my gran down on the list too.
     
  9. MEValentijn

    MEValentijn Type 2 · Active Member

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    This is pretty good, usually considered borderline diabetic or well-controlled.

    Urea and electrolytes in blood, basically checking kidney function.

    It looks like normal is <5, so that seems to be very elevated. It's the most common cause of Type 1 diabetes

    This should be around 15 or lower, so it's also elevated. It's less common, but people with this antibody usually have the GAD antibody too.

    Normal seems to be 250 or higher, so you're probably producing plenty of insulin.

    You might not need to inject insulin at all for now, though almost certainly will eventually, since it can take a while for the antibodies to do enough damage to make you insulin dependent. You probably do need some monitoring so it doesn't sneak up on you when you stop producing, or if you get an infection and things go wonky temporarily. But you can talk to your doctor about whether the insulin is necessary at this point.
     
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  10. StaceyEmma

    StaceyEmma · Well-Known Member

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    Thank you for explaining through it. The only one I had any kind of idea about was the c-pep. It’s the only one they all showed me on the screen - Definitely still in the honeymoon period nearly 5 years in now.

    In regards to injecting they already have me on 2 units of novo rapid 3x daily and 5 units of degludec once daily. Generally average between 4mmol and 18 mmol throughout the course of the day highest being after my evening meal.
     
  11. CondorX

    CondorX Type 2 · Well-Known Member

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    Just wanted to fill in the few gaps, EGFR is Effective Glomerular filtration rate, ie how well your kidneys are working to make urine - that function is fine.
    TSH is your Thyroid Stimulating Hormone level - if this is very high it usually means your thyroid is battling to cope. Too low usually means an overactive thyroid. Your level is within normal range.

    Best of luck and hope it all gets under good control soon.
     
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  12. StaceyEmma

    StaceyEmma · Well-Known Member

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    Thanks Condor.
    I’m hoping so too. Back in with my nurse on Friday.

    I am finding that I’m getting painful injection sites before the needle is all the way in- yes I’m pinching and change spot for each injection I know it’s a different spot coz there’s no bruising.

    Really wished this diagnosis could have waited a few more weeks it’s my birthday tomorrow and it won’t feel the same if I can’t eat birthday cake.
     
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  13. Marie 2

    Marie 2 LADA · Well-Known Member

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    I'm not sure this is pertinent at all but in case it helps. When I had a couple of small lumps in my stomach area that were a little sore, my doctor sent me to the surgeon to have them removed. The surgeon said no way as they were fatty tissue inflammation and if he does anything it could cause the areas around them to do the same thing. Mine went away after a time. But people do get skin inflammation issues.
     
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  14. StaceyEmma

    StaceyEmma · Well-Known Member

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    Thanks Maria. My sore spots seem to be on my thighs can get into my stomach with no pain
     
  15. EllieM

    EllieM Type 1 · Well-Known Member

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    I'd have thought a T1 can cope with cake a lot better than a T2, you guestimate the carbs and inject for it... But if they haven't got you carb counting and adjusting insulin yet maybe not. Look at it this way, you'll be in a better place than a T2 for next year's birthday... :)
     
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  16. StaceyEmma

    StaceyEmma · Well-Known Member

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    I’m not carb counting yet. 2 units of novo rapid with meals
     
  17. EllieM

    EllieM Type 1 · Well-Known Member

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    In the long run, you'll be able to inject the right amount of insulin for the carbs you're having, and also have a correction dose, so many units of insulin to bring your blood sugar down a certain amount. Has your team told you to eat a certain amount of carb per meal ?
     
  18. StaceyEmma

    StaceyEmma · Well-Known Member

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    No they’ve not put a limit on my carbs yet. Maybe after I’ve been on the carb counting course?
     
  19. Lynnzhealth

    Lynnzhealth Type 1 · Well-Known Member

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    I'm in Canada and I got my CGM two weeks ago. I love it and I do occasionally test with a finger prick, just to make sure it's working properly. I also have to test before driving 'cause I can go low so fast. I had to sit in my car in a parking lot last week right after lunch and wait til it got above 5 before I could drive home. What a different way of living this has been for the past month. Oh, just thought of something. Marie 2, do you still have blood work to test for A1C? If so, do you have to fast? And, if so, what happens if your sugars go too low before your appointment? I have to go next week and I'm totally lost about this. I did fast when they thought I had T2, before I had my incident with DKA, because I wasn't on any meds at all. My blood work results haven't come back yet, so not quite sure which type I now have. Was diagnosed as T2 in 2017.

    StaceyEmma, my diabetic educator told me the two doctors said I need at least 100 gm of carbs every day. My sugars spike when I eat bread/sugar. Then I crash and go low. I'm supposed to have the carb counting course at my next appt. I'm not going to eat 100 g a day, that's for sure. I'm anxious for the results to come back so I'll know exactly what Type I actually am. When I was T2 I went Low Carb Healthy Fat and kept my sugars in the normal range and my A1C was great. Now it's a whole new ball game. Good luck at your appointments. Thinking of you. Take care.
     
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  20. Marie 2

    Marie 2 LADA · Well-Known Member

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    @Lynnzhealth I do get an A1C every 3-6 months, depends who I see when! Fasting has nothing to do with A1C and your sugar level at that exact moment has nothing to do with an A1C test. It is an average over about 3 months of what your sugars are.

    So if your sugars are low at that moment, it won't matter on an A1C, however sometimes they will test your glucose level at the same time and that will show low. But you can drink some OJ before you go in to raise your level if needed, keeping in mind to not to go too high as that will show on a standard glucose check too.

    And then of course they like to do other tests half the time at the same time of your A1C test and what you eat can make a difference in those tests! Although a little sip of OJ usually won't matter.
     
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