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[emoji19]should we ignore the stuff some medics say?

Discussion in 'Blood Glucose Monitoring' started by TypeZero., Jul 11, 2020.

  1. TypeZero.

    TypeZero. · Well-Known Member

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    According to my Libre I was checking 70 times a day. Please note that I do not inject insulin at every sight of a slightly high blood glucose, I inject when there is more than 1 hour to the next meal and if it’s over 9, maybe around maximum 8 injections a day at the very max. I just check because I want to know and I don’t have much to do due to the coronavirus so I’m currently very diabetes-focused. But what about the people who relay their Libre or Dexcom data onto a smart watch, they probably check their BG 100s of times because they just glance at the watch and it shows the value

    My endo thinks I’m going to have diabetic burnout and told me to scan way less. I scan around 15 times a day now but my control has been rubbish ever since. I feel like I’m compromising my health because of a man who was taught “everyone who checks too often gets a mental illness and doesn’t check anymore”. Of course we T1Ds get frustrated here and there due to the constant refusal of our bodies to have BG within range but I never would stop checking, they can mark my words.

    From what I can see healthcare professionals don’t seem to care as long as you don’t have anything life threatening. They are focused on the lows rather than the highs. But those highs are what causes long term complications.

    I’m actually so annoyed and upset. Because they don’t want me to do it my way and when I follow their guidance I get poor control. I’m supposed to be on my “honeymoon” yet I still have to bolus for all meals and have a moderate intake of long acting. I can wake up on like 12 for no odd reason which frustrates me. Does anyone’s endo just leave them alone? I wish mine would do just that.

    My HbA1c on Libre was 6% and he was like “oh tight control is not good because you will lose hypo awareness” ok but should I just leave my BG high all day?
     
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  2. Jim Lahey

    Jim Lahey I reversed my Type 2 · Well-Known Member

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    I am/was T2, but I had to ignore all standard advice in order to reverse it. We are all individuals, but the only thing I will say with reasonable authority is to never, ever, take glucose monitoring advice from someone who doesn't have diabetes. No sickcare professional has ever told me when and when not to test my glucose and gotten away with it, put it that way.
     
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  3. kevsta

    kevsta · Member

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    I agree. I’m a T2 and I’ve recently just start monitoring my levels sometimes I’ve been doing this about 8/9 times a day because I want to know what my body is going and how it’s processing the foods I’m eating, Because at the end of the i have a condition that potentially if left uncheck could lead to other long difficult health Related issues so

    I’d say check as many times as you like however just remember that your on a road and to get to where you want to be takes time and to change your course to fit your needs


    Hope that helps
     
  4. Brunneria

    Brunneria Other · Moderator
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    Burnout is a very real, very destructive thing, and it can last for years, with serious long term consequences.
    I can’t imagine that there are many T1s who don’t get burned out at some point during the decades they have to cope with the unremitting grind of insulin and blood glucose management.

    however, I think that time and individual personalities and mindsets are going to play a huge part in if, when, and how that happens.

    if I remember correctly, @TypeZero you are only a few months into this.
    So I would suggest that laying down good practices and a steady attitude will help you tremendously when Burnout (almost inevitably) strikes at some point in the future.

    I would also strongly suggest that you never ignore what medics say. Whether they give good or bad advice, it is up to you to educate yourself, understand their advice and why they said it (whatever the reason), and then make a conscious decision as to whether following that advice is beneficial to you and your individual circumstances. Your health will always ultimately be your responsibility. That is one of the contributing factors in developing Burnout.

    edited to add: there is a book by William H Polonsky called Diabetes Burnout which you may, one day, find a useful read.
     
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    #4 Brunneria, Jul 11, 2020 at 9:18 AM
    Last edited: Jul 11, 2020
  5. ert

    ert Type 1 · Well-Known Member

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    I was overly anxious when I was diagnosed and again when I started insulin. This led me to check my blood sugars hundreds of of times, with diabetes always at the forefront of everything I did. I felt exhausted.

    After getting a Miao Miao, an attachment to the Libre with Bluetooth data and alarms, (my alarms set for above 7.2 mmol/L or below 4 mmol/L) I didn't need to check anymore. I stopped thinking about diabetes, or blood sugars except when dosing. Sometimes hours pass, or if I'm intermittent fasting - the day, and I forget completely I'm diabetic. I feel it has finally moved somewhere into the background of my life.
     
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  6. In Response

    In Response · Well-Known Member

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    I do not ignore what health care professionals tell me.
    On the other hand I don’t follow everything they tell me.
    I consider what they tell me, if it is not urgent, I research it and make a decision.
    Many people experience diabetes burnout and should be taken very seriously.
    Not everyone but it is something we should all be very aware of.

    I have read a lot about “life balance”. Often this is thought about in terms of work/family/social/me time. But I think it is equally true in terms of physical/mental health balance.
    We all have a different fulcrum to balance our lives - some need more time with our family, some people need more time for ourselves and some people can thrown themselves into work all our waking lives. The same is true with regard to our physical and mental fulcrum: for some people focusing on our physical health (diabetes management, diet, exercise, ...) can help with our mental wellbeing but for others they need to shift the balance towards the mental health as a more positive outlooks makes us want to exercise, eat less rubbish, etc.

    In short, my advice is be aware of diabetes burnout - it is real and serious - listen to your health care professionals and make your own educated decision. But don’t just ignore them.
    That is my opinion. Others think differently, have different experience, have different health care professionals.
     
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  7. KK123

    KK123 Type 1 · Well-Known Member

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    I do understand what you mean but I think your Endo is right to point out that checking 70 times a day MAY cause burnout or lead to other issues. Maybe he has seen it happen in numerous people and wants you to be forewarned, maybe he is concerned because he thinks you are becoming overly obsessive. Of course only YOU know whether this is the case and if it's not then carry on to your hearts content, it's your life. However, how is he expected to know if this will apply to you, I have no doubt he sees a 100 patients who all say 'No, no, I'm fine' when they turn out not to be, hence he's asking you and explaining what MIGHT happen. He can't stop you checking anyway. As others have said, don't ignore what he says out of hand or pique but consider it and then ignore it if you like, after considered research, especially as an insulin user. I don't know what makes you think you are supposed to be on a honeymoon, not everyone gets one, all it means anyway is that you may still be producing some insulin of your own thus your exogenous insulin requirements may be lower. I reckon most of us complain about not seeing an Endo as much as we would like, personally I think you are lucky to have one that's interested even if you don't agree with him. x
     
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  8. TypeZero.

    TypeZero. · Well-Known Member

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    They told me themselves that I’m on my honeymoon but I’m pretty sure they’re wrong. My C peptide was 113 pmol/L when first diagnosed. It looks like I am producing some insulin but not enough to make any difference in my life, I’m making barely enough insulin to cover like 40-50% of my basal. There’s no effect on my mealtime boluses either, I use a 1:10 ratio for all meals and they work perfectly.

    Sadly my pancreas is not helping me at all apart from covering a part of my basal. My GAD antibodies were quite high at 713 units/mL which I suppose is not allowing my pancreas to recover.

    Yeah I do understand that 70 times a day is quite a lot but he was looking at the data from my 2nd sensor and you know when you get something new you try it out I think that’s what happened to me. First sensor 93 scans a day, 2nd sensor 70 scans a day, 3rd sensor 40 scans a day and so on.

    It’s good to have a consultant/endo but I feel like I’ve already run out of things to say in one appointment. I have an appointment practically every month maybe twice a month with different people like dietitian, nurse and consultant. I don’t know if that is the norm or if it’s because I’m newly diagnosed. I feel like I don’t need anymore help from medics apart from maybe a DAFNE course and treatment options such as a pump.
     
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  9. ert

    ert Type 1 · Well-Known Member

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    I used to think it was ironic that these consultants who didn't have type 1 themselves, were so full of advice. How could they even begin to walk in my shoes? But they follow the science, and I realise I still have a lot to learn. As we're all different, with different IR and insulin doses etc, etc, and it's important to be as informed as you can be, and try their suggestions, before settling into a routine with what works for you. For example, with a dietitian, I'd already made a choice not to eat 'normally' but it was invaluable to learn to dose for foods, in case I decided to eat normally, which does happen every week. My nurse covered injection sites, and even now, I forget to rotate and find myself checking like I was shown, just to see if that's the reason why my insulin appears to have suddenly become ineffective, which also happens. My consultant looks through the data on my phone app and has come up with ideas from the patterns in the numbers, that I had not considered, though I'd analysed and researched them to death. In the end, they say knowledge is power. For me, it's a lifeline.
     
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    #9 ert, Jul 11, 2020 at 5:39 PM
    Last edited: Jul 11, 2020
  10. Lamont D

    Lamont D Reactive hypoglycemia · Master

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    Through it all, I have depended on my experience, my research and my blood glucose monitor to get at the truth, of what happens when I eat!
    I do believe that most dietary/medical advice is well intentioned and a good healthy nutritional diet is the best any medical practitioner can give to a normal healthy non diabetic. But for someone like me, who is definitely non diabetic, but is prone to hypos, this normal healthy diet, is what was killing me!
    I have believed for a long time now, that a tailored dietary intake is more important than any drugs, exercise and 'a healthy diet'!

    During my first eOGTT, the sister and house doctor insisted on giving me food and drink because I was going hypo, as a T1 or T2! They didn't understand what or why I was going hypo every few hours, if they didn't understand, how can you not try and do something that should work and be safe,? Than do things that they haven't been trained for!
    A saying from my childhood- ' If you don't know, you don't know! Ask someone who does!

    Stay safe
     
  11. Jaylee

    Jaylee Type 1 · Moderator
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    Hi @TypeZero. ,

    Yep. Feeling a little disenfranchised with the conveyer belt of appointments with people who seem a little intrusive & not "in touch?" To be fair, if did have a particularly cool GP back in the day.. (Now retired.) In hindsight quite forward thinking...

    It's your choice regarding whether to ignore the advice. Just don't forsake your own condition.
     
  12. Alexandra100

    Alexandra100 Prefer not to say · Well-Known Member

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    I'll add, think very hard before taking the advice of someone who DOES have diabetes, especially, yes ESPECIALLY if they are a health professional!!!! I recently had a routine telephone checkup with a representative of a vascular surgery dept. He turned out to be a retired cardiology specialist. I imagine he had been drafted in to help catch up on a backlog of patients due to Covid. He took it on himself to lecture me on my (admittedly poor) cholesterol results and is writing to my GP to insist that I should be prescribed a statin. He dismissed my concern that a statin might raise my bg, considering that even if it did it was of no consequence. I understood his stance when, in reply to my mentioning my low carb diet, he objected, "Life is for living" and revealed that he himself is a diabetic. Not a well-controlled one, or I miss my guess.
     
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  13. Alexandra100

    Alexandra100 Prefer not to say · Well-Known Member

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    If you haven't already come across him, I think you'll find comfort in reading Dr Bernstein's story http://www.diabetes-book.com/bernstein-life-with-diabetes/
    and his book (much of it available online free). Or you can find his video lectures on Youtube. He says exactly what you have said here, with chapter and verse.
     
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  14. HSSS

    HSSS Type 2 · Well-Known Member

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    Well as the medics don’t all agree we have to ignore some of them x what matters is which ones
     
  15. Alexandra100

    Alexandra100 Prefer not to say · Well-Known Member

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    IMO everyone has something valuable to teach me, and everyone is getting something wrong, so buyer beware!
     
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