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Haven't had normal blood sugars ever - averaging 300-400 most days - anxious and feel terrible

Discussion in 'Emotional and Mental Health' started by sam0x00, Feb 12, 2019.

  1. sam0x00

    sam0x00 · Newbie

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    Hey all,

    This is my first post on the forum and I guess I'd like to just describe my situation and see if there is anyone here who can relate to it. I feel that my case is very extreme and I'm almost embarrassed about how poorly I've handled my diabetes.

    I'm a 19 year old living by myself in the United States. I was diagnosed in 2nd grade and, from then until 5th grade, had someone treating my diabetes and lived with good numbers (80-120).

    In late middle school (maybe 13-14) I had a lot of bad experiences and terrible anxieties associated with diabetes. My parent would lock the kitchen with locks to stop me from eating to raise my blood sugar from a fear that I would go low. My blood sugar was in the range of 400 consistently and I felt the most comfortable when I was at that range.

    I went to diabetic camps and would sneak food because I was terrified of going low. I was admitted to the hospital and the doctors caught me sneaking out to steal food because I was afraid I would be low.

    This was all 4-5 years ago. When I got into high school, most of my fears seemed to really fade away but I was left with no real objective in managing the disease. I didn't care what my blood sugar was. I kept it around 300-400 all of the time.

    I've graduated high school and work as a cyber security consultant and still struggle to keep my numbers anywhere in the range of normal.

    My day will start - I will get up (my blood sugar is always fine in the morning, even if I go to sleep at 300-400) - I will eat, not really care about treating, then work on my computer. I'll pay enough attention to lower it if it gets to 300-400 and give myself insulin, but keep doing things throughout my day. I get anxious at night and feel that I'll drop low in my sleep if I fall asleep at regular numbers.

    I feel terrible, it seems, always.

    I just never seem to ever have the commitment to a long term battle with keeping my blood sugars normal. Sometimes they'll be normal - 150, 200 - and I feel fantastic! But I just can never commit to managing it.

    I haven't ever had a real conversation with my doctor. It's the same thing every time. "Your numbers are horrible! You need to start working on this! This is bad!" and I feel terrible going into the doctors. I feel incredibly uncomfortable every time and I'll sometimes skip meetings because I don't want to get lectured.

    Has anyone dealt with anything similar?

    I feel that most of these issues almost seem beyond diabetes. I've always felt I've had terrible anxiety problems. It's always so hard to tell whether something is my diabetes or my anxiety.

    I really want to change, but I don't have any confidence I can keep up this long term battle. I'll sometimes just consider not doing anything and eventually just letting myself go.

    Sorry if this is the wrong place.

    Just looking for some resource or link to another diabetic. I feel very isolated and it seems like this is my own individual battle. I feel that this case just falls outside the scope of anything I've ever seen and I have trouble communicating it.

    Thank you so much,
    • Hug Hug x 3
  2. Diakat

    Diakat Type 1 · Expert
    Retired Moderator

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    Hi @sam0x00

    Well you have posted which is a start. Frankly, I am amazed that you have not been hospitalised with DKA.

    Is there anyway you can see a different doctor?
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  3. kitedoc

    kitedoc Type 1 · Well-Known Member

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    Hi @sam0x00, Thank you for posting. It takes courage to admit that things are not perfect and to seek help about them.
    I was 13 when diagnosed and recall the anxieties and ups and downs (and this was ages ago before glucose meters, fancy insulins, pens and pumps).
    Hypos are terrifying when you do not know why it is happening and what to do to prevent them !!
    I am glad the fear of hypos side of things is less. That takes courage to solve too.
    Now, as a TID of 52 years, not as professional advice or opinion:
    The second best control I have ever had of my BSLs in my 52 years on insulin was when I went onto an insulin pump 7 years ago. Night-time hypos were causing mayhem. Using the pump saved me from bad hypos, loss of my car license and limiting my job future.
    The best control of BSLs has been over the past 6 weeks: I read an e-book called "Dr Bernstein's Diabetes Solution" revised 2011.
    He is your countryman, now I think at 65 years plus on insulin. If you read this book, think about and maybe try-out the low carb diet recommended and other suggestions you may find a great improvement in your own diabetes (without necessarily needing an insulin pump.)- but I would suggest speaking with your doctor first.
    Most doctors in US and certainly here in Australia, are fixated on higher carb diets, as per the last 50 years mantra. We now know that to a greater or lesser degree these type of diets have been influenced by the food industry. You may recall how many adverts there are for breakfast cereals and how they still appear in some form in most current diabetic diets.(and that is just one example).
    What got my attention about Dr Bernstein's book (and I have read so many ideas on diabetic diets over 50 years that it takes a lot to get more attention) is a) simplicity - more carbs --> higher BSLs --> more insulin --> hypos --> hypers --> more insulin etc. Why not have less carbs ? b) low fat diets and higher carb diets leave me hungry -- > snacks --> BSLs up and insulin dose + whereas a low carbs high protein diet (most protein contains fat anyway) keeps me feeling full and satisfied so that 2 or 3 meals a day are fine with no need for in between snacks c) the less insulin needed means that less risk of hypos AND of severe hypos
    d) despite the added protein the diet lead to me losing a bit of weight - the weight that can add on with hypos /eating /hypers/ insulin etc cycle) e) straight after I started on this diet, I had some days of feeling unwell as my body changed from burning carbs over to a greater use of burning fats - so the ketones go up a bit, and this is called 'the 'keto flu' dietdoctor.com talks about this BUT as long as my BSLs are OK there has not been any worry about keto-acidosis. But I have energy, fantastic BSLs. Again this is why you need to speak with your doctor and also because as you lower carbs you have to adjust insulin doses.
    In Dr B's book he is taking about 30 g of carb, mine is closer to 40 g, it depends on doing things like exercise, protein intake etc.
    BUT - Given your current situation why would you bother? What could motivate you to at least look at this option with your doctor.? Well, there are a number of us T1Ds on site who have found this approach keeps us healthy, has allowed some diabetes complications to be reversed and amazed the doctors. Yes these are mainly UK T1Ds but if you look also at type1True Grit * website in US (they support Dr Bernstein's solution as opposed to the ADA) you can see what people including children of the age when you were first diagnosed and older have achieved there.
    But just to be clear, there are other T1Ds on this site who stick with higher carb diets and have been doing so and injecting insulin for longer than I have. Not everybody wishes to and feel they need to be on a low carb diet.
    But if what I have written that is still not enough to persuade you, can you imagine living on with the way you feel at present with your current BSLs? Do you worry about what these levels might be doing to your eyes, kidneys and nerves?
    I can certainly recall how tired and lousy I felt with high BSLs and how much better once on steady BSLs in normal range.
    Please think on this - it is the best first suggestion I can suggest for you. But form some form of alliance with your doctor as the first step in any such endevour.
    Keep posting to let us know what you decide on or you run into obstructions along the way. and how you are feeling.:):):)
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  4. Antechinus

    Antechinus Don't have diabetes · Well-Known Member

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    Hi Sam

    Have you tried discussing your anxieties about hypo's with a counsilor or therapistof some kind. Anxiety is a very common issue and there are some great non-medicenal treatments. Sometimes its the fear of something that prevents you from moving forward. I think your fear of a hypo is preventing better glucose control. A counsilor may help rationalize that fear.
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  5. BeccyB

    BeccyB Type 1 · Well-Known Member

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    Hi Sam

    Well done for reaching out to us - I'm so glad you're looking for help and not giving in. I used to suffer from fear of going low and let my sugars run high on purpose too - please know you are not alone in how you are feeling.

    I have found using the Dexcom CGM has massively helped as I can be confident it will alert me if I start to drop. In the beginning I had my alarms set at a much higher level than most would, and then as my confidence has built I have slowly lowered them. I still treat a 'hypo' at levels that a lot of people think are perfectly ok (especially at night!) but it's much better than it was. My HbA1c was regularly 13%+ but the last year they have dropped - 10.8 then 8.9 and the last one was 7.7% (not sure what they are in US numbers sorry) I don't know what the situation is with getting access to cgm over there but I have to pay privately here (UK) but think it's worth it as I feel much better and have less fear about complications in the future.

    Whether it is through counselling, diets or CGM I hope you find what works for you soon - in the meantime come on here to rant or ask questions and believe in yourself, you will get better x
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  6. Resurgam

    Resurgam Type 2 (in remission!) · Expert

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    For US translation, divide by 18.
    For me (as a type two diabetic) normal is about 100 and 150 is high.
    400 is the low 20s in mmol/l. and I think a cause for concern.
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  7. Patrick66

    Patrick66 Type 2 · Well-Known Member

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    Hey, don't be embarrassed about how you've treated your diabetes.

    None of us know it all and, starting out we usually make a mess of things and I am sure most of us (including me) hit bumps along the road because its all a balancing act and sometimes, for a number of reasons, that balance goes up or goes down.

    The most important thing is that you recognise there's an issue and you work towards doing something about it. But if you have a bad day then that's just what it is; a bad day, and there is always tomorrow. We are often our harshest critics and sometimes we need a third party to take an objective view. Did we eat well or poorly ?. Are there underlying reasons for a spike ?. Often, because we are the ones involved, we don't think about that as we are the ones comfort eating through a virus. Its easy to become blind to the reality.
    But you are here, you have reached out and that's a start.

    Good Luck!
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  8. JoKalsbeek

    JoKalsbeek I reversed my Type 2 · Well-Known Member

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    Hey @sam0x00,

    I'm a T2, so far as that goes, not much use. But I've been around doctors and hospitals since my pre-teens, (probably around 8 or 9 years old), so I do know a doctor who doesn't actually listen to you and just does the chiding thing, well... Isn't very good. (And yes, terrified of people though i may be, I have walked out of doctor's offices more than once when iI felt they were being d**ks) It just makes a lot of patients shut down and avoid care, because all they're getting is a telling-to rather than actual help, and at least some degree of understanding. So that's on your doc, not you. Can you change or get a referral elsewhere?

    On top of that, anxiety rules my life. It's not as bad as it used to be, now that I have my bloodsugars under control, so yeah... Running high all the time can make it worse. Does for me anyway. Do you have a continious blood glucose meter? A Freestyle Libre and a pump or something? I'm thinking you probably do, but if you don't, it could help you keep an eye on your bloodsugars and help you regulate more. Give you a beep should you go low, so you won't have to worry about hypo's anymore. But you'll have to want to do it for YOU. Not because some ***hole doctor's being a pain about it, but because you want to feel better than you do right now. Have a more enjoyable life, you know? (And I'm thinking you do, otherwise you wouldn't be posting here, right?).

    Basically, everyone with a chronic illness, be it something that eats away your joints and muscles or something that could send you to hospital with DKA, all of them are little misunderstood islands... Because more often than not, there's no-one around to compare notes with. And I have a feeling your case isn't exactly extreme; more like, it happens, but good luck finding someone who has your courage to speak up! (Odds are good in this place though, so good on you for posting!).

    She's not diabetic yet (has been diagnosed with prediabetes I believe), but you might want to read Jenny Lawson's books, Let's Pretend This Never Happened and Furiously Happy. She's got a whole lot of health issues, plus depression and anxiety, and she's so relatable it's like she's peeked into your mind. And she will make you **** yourself with laughter at the same time, maybe even hit you right in the feels, sometimes simultaneously. It's good to breathe, and know you're not alone in having to deal with issues... People find work-arounds, discover what works for them, (cyber security: a friend of mine does that, he does his thing from home. Is that a work-around of yours?). All in all... It's not diabetes, but a lot of what she talks about applies to all of us non-healthy's. Just an idea.

    Find what works for you. Could be therapy, could be a libre and a pump if they're not already in your life... Could be a different doc for referral, or hey, maybe you could eat a LITTLE less carbs (Not pitching keto or LCHF here though!) and avoid peaks and dips that way? Try to keep things on an even keel?

    I dunno. Just a T2. But I do hope you'll start caring enough to care for yourself. ;)
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