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Trying to stay alive any help

Discussion in 'Type 1 Diabetes' started by DannyH, May 15, 2022.

  1. DannyH

    DannyH Type 1 · Well-Known Member

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    Me again, anyone have any ideas what to do, just a starting point would do. Already losing vision, now getting balance problems, numb feet etc, only 41 and feel like death, can certain insulin disagree with you, I take 2 background of levimir and around 4 or so nova rapid a day. I see a specialist but have no clue about ratios how to set background etc I just don't know anymore, had sugars daily in 20s over last year alone. hba1c over 100. Dread to think what damage is being done just seem to be getting worse but trying to hold on as much as I can. Everything seems we'll try this or you need to meet the criteria, average glucose over last month 22. And the meter I have just gives different readings one said 30 odd and a minute later it's 16. I just don't know any more.
     
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  2. DannyH

    DannyH Type 1 · Well-Known Member

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  3. Antje77

    Antje77 LADA · Moderator
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    Have you asked about doing a DAFNE course?
     
  4. DannyH

    DannyH Type 1 · Well-Known Member

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    Il ask going again this week, sorry not being ignorant just feeling rough and got to go, thanks for reply
     
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  5. Zhnyaka

    Zhnyaka Type 1 · Well-Known Member

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    I'm not 100% sure, but it looks like you don't have enough levemir. Maybe you should try to remove food containing carbohydrates and try to even out the dose? I see you have cgm, so you can notice how your sugar rises and inject insulin before your BG becomes too high. Why won't your doctor give you a referral to a hospital with such BG? Maybe you really need to change insulin. As far as I know, in such cases, doctors usually recommend using a pump. Ask your doctor
     
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  6. JAT1

    JAT1 Type 1 · Well-Known Member

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    What have you eaten today? How much insulin did you take for the food you had today and when did you take it? Do you count carbs?
     
  7. EllieM

    EllieM Type 1 · Moderator
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    It's good that you are going again so soon. I strongly suggest you keep a detailed food and bg diary, then ask them what levels you should be aiming for (it may or may not be best to reduce your levels down slowly) and how you should modify your ratios according to your bg levels. I agree with @Antje77 that a DAFNE course might help, and yes, some insulins agree with some people more than others.

    I recommend writing down the list of questions before you go so you don't miss anything. Good luck.

    (ps I had several years of sky high bg levels in my teens which I seem to have recovered from, so there's always hope for improvement.)
     
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  8. Draco16

    Draco16 Type 1 · Well-Known Member

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    Hi, ok the definite 100% fact is that given what you eat you don't take enough insulin to cover it, resulting in these very high blood sugar readings.

    To get better at judging how much more insulin to take you must eat the same meals everyday for a couple of weeks so you can learn how to better match insulin to carbs.

    then over these 14 days e.g. lunchtimes of eating exactly the same thing you can look at (keep notes / diary) your
    a) pre meal BS reading
    b) 3 hours post meal BS reading (aim to edge this slowly lower over the 14 days)
    c) how much insulin you took

    Do the same for breakfast and dinner.

    This is incredibly simple and it is the only way you can learn to take more insulin.

    It also requires discipline and determination - but you've proven you've got loads of that as you mentioned you have given up caffeine and alcohol (I certainly never could!)
     
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  9. StewM

    StewM Type 1 · Well-Known Member

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    Danny hasn't mentioned what he eats, so why do you say "given what you eat"?
     
  10. Draco16

    Draco16 Type 1 · Well-Known Member

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    ???

    He said he's got very high blood sugars!

    On another thread he has said that he does no activity. So his blood sugars are overwhelmingly a result of his food intake versus insulin intake (rather than the usual main 3 factors of food, activity, insulin... and then the smaller dozens of other smaller factors that effect BS).

    On another thread he has said that he generally eats quite well, and as mentioned he's cut out alcohol and caffeine.

    He could be on 30g or 300g of carbs per day - it doesn't matter - he simply does not take enough insulin to compensate. Ergo "given what he eats".

    Hence fixing his meals everyday whether that be a 20g carb lunch or 100g carb lunch, he needs to learn to increase his insulin doses. Learn to manage the same 20g/100g/whatever grams carb lunch everyday.
     
  11. EllieM

    EllieM Type 1 · Moderator
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    While I mostly agree with you, there is also the possibility that @DannyH 's basal is still too low, plus other possibilities such as mal absorption through insulin sites?

    DannyH, it would be really really good if your diabetic team could give you more help.....
     
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    #11 EllieM, May 16, 2022 at 10:41 AM
    Last edited: May 16, 2022
  12. Draco16

    Draco16 Type 1 · Well-Known Member

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    Indeed! That would fall into the not taking enough insulin fact.

    Could well be that he has malabsorbtion sites, but that is going to be the same meal to meal rightnow. They will improve long term as lower BS levels allows his body to better repair itself.

    100% his diabetic team should be doing more...
     
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  13. DannyH

    DannyH Type 1 · Well-Known Member

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    Morning I take 16 units of levimir in morning 18 at night, I do have similar things in morning small cereals, I get that small bread 10g in each slice, I probably have around 30/40g in morning then around 6 units of Nova rapid alot of the time it doesn't bring it down alot but then sometimes It does, I know in the afternoon if I had one unit of Nova rapid to 10grams of carbs my sugars would come down, sometimes I've had double the amount of carbs to insulin and my sugars have not moved after 3/4 hours so Iam not sure if morning background is too high or evening or ratios of fast insulin is out. My diabetes team have gave me two new meters as my current meter is being random alot. For some reason I don't like doing more than 7 units in one go as I fear it crashing, iam on various eye drops etc Ie steroid ones but not sure how much that gets into the system. Do try and get out or today dad picked me up, lasted bout 20 minutes total exhausted feeling sick sugars at 20 just feeling rough all the time.
     
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  14. StewM

    StewM Type 1 · Well-Known Member

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    Yes Draco, but it's crucial to identify which Insulin.

    If his Basal is too low, the Bolus will always struggle to make up the difference, as that's not its job.
     
  15. StewM

    StewM Type 1 · Well-Known Member

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    Hi Danny, why do you believe your morning background is too high if your Blood Sugar's always very high (as per the readings you've shown us)?
     
  16. Rokaab

    Rokaab Type 1 · Well-Known Member

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    Do note that your carb ratio may well not be the same all day, many of us find we need more insulin per carb in the morning for instance, I have different ratios for breakfast, lunch dinner and late night snack (if I'm hungry) - I need nearly twice as much for breakfast carbs as I do for dinner carbs

    I really do think you should try and tell your team that you really really really urgently need to go on the DAFNE (or local equivalent) course as that should help you work things out - I know on the course I went on, for some of each of the sessions we got one-to-one advice depending on what our food/insulin/blood test diaries showed (that we had to fill in for said course).

    If you're averaging about 20mmol/L surely they should be able to see you need some help and you will not feel good
     
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  17. DannyH

    DannyH Type 1 · Well-Known Member

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    Hi Stew, I just feel really sensitive around 12 o'clock in the afternoon and on a lot of occasions I've had 1 unit of Nova rapid to 10 grams of carbs and my sugars have come down sometimes quite a lot, it only happens around 12 o'clock, so it just feels something else is pulling it down so quite often I do not do a correctional dose in the afternoon. I usually only do correctional doses in the evening and then i seem quite resistant etc, but I usually only do a maximum 2/3 units in one go for a correctional dose. Sometimes I've had 2/3 correctional doses at night and it's not done alot, unsure if this can stay in system till the next day, ive only been doing a couple units correction at a time as sometimes if I do more it can crash quick and that leaves me feeling rubbish.
     
  18. DannyH

    DannyH Type 1 · Well-Known Member

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    Hi Rok iam back again on Wednesday, I have been on carb counting Dafne course but that was many years ago, IAM sure if any of its changed now. IAM going to ask about it then, as I haven't been shown anything bout setting basal insulin or ratios at different times etc. I am seeing the diabetes team regular, they did say there going to try and get a consultant on board. They also think the eye drops and a tablet Iam taking for my eye could be throwing things out about.
     
  19. Juicyj

    Juicyj Type 1 · Expert
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    Hi Danny,

    As you're used to running high levels you will feel rubbish when your levels drop, it's almost like a hypo sensation, that's why bring them down slowly will help you to acclimatise to running in range. As said before slowly slowly.

    Have a read of this Brightspots and Landmines - it's the most useful guide i've come across to managing t1 so far, practical and easy to understand:

    Here's his website you can download it free as a PDF. https://brightspotsandlandmines.org/
     
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  20. StewM

    StewM Type 1 · Well-Known Member

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    Thanks Danny.

    If your Novoarapid doses are bringing you down rapidly whilst your Blood Sugars are remaining consistently high then that does *suggest* that your Basal Doses are too low, and your Bolus doses are *potentially* too high.

    Before changing anything, however, I'd suggest contacting your team. As I'm not even sure how reliable a Basal Test, to determine your Basal needs, would be whilst your Blood Sugars are so far out of target range.

    Also, the link Juicy just posted looks very useful.
     
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