1. This site uses cookies. By continuing to use this site, you are agreeing to our use of cookies. Learn More.
  2. Get the Diabetes Forum App for your phone - available on iOS and Android.
    Dismiss Notice
  3. Guest, we'd love to know what you think about the forum! Take the Diabetes Forum Survey 2019 »
    Dismiss Notice
  4. Diabetes Forum should not be used in an emergency and does not replace your healthcare professional relationship. Posts can be seen by the public.
    Dismiss Notice
Dismiss Notice
Find support, ask questions and share your experiences. Join the community »

Feeling a bit abandoned by system

Discussion in 'Newly Diagnosed' started by Pilgrimmick, Aug 4, 2019.

  1. Pilgrimmick

    Pilgrimmick · Member

    Messages:
    11
    Likes Received:
    5
    Trophy Points:
    3
    Diagnosed in hospital two days ago and now free to roam. (TYPE 1)

    I was taken into hospital on Thursday night with blood glucose readings in the 30+ range and Ketones of 4.1

    After a crash course in testing and injections I am now at home and feeling slightly overwhelmed. I still have high blood glucose levels.

    I have been told to stick with 18 units of Lantus at night and use 12 units of Novorapid at meals. Think that this dosage is too low as blood glucose is double figures in the morning and climbing to high 20s at night.

    Want to try carb counting, but will not have an appointment with nurse till mid week at earliest!

    Just seems to me that I am still at levels that are too high.
     
    • Hug Hug x 4
  2. kaylz91

    kaylz91 Type 1 · Well-Known Member

    Messages:
    565
    Likes Received:
    631
    Trophy Points:
    153
    Hi :)

    it is better to get levels down slowly and gradually than get it down right away as it can cause extra strain on the body that way

    it also may take a while for your body to settle to now using insulin and results really aren't instant unfortunately

    Are you keeping an eye on your ketones with still having higher levels?

    It's great that your so keen to get to carb counting (I too was eager to do it and haven't been on a course so I'm self taught) but it does involve a lot og time, effort and testing, there are some been diagnosed years that still don't carb count

    in this world its a marathon not a sprint so just take things easy
    xx
     
    • Like Like x 3
    • Agree Agree x 3
    • Winner Winner x 2
  3. ert

    ert Type 1 · Well-Known Member

    Messages:
    680
    Likes Received:
    666
    Trophy Points:
    133
    I'm sorry you're feeling abandoned. You've come to the right place, there are a lot of experienced T1 members here, who will be able to give you some advice. I'm also new to using insulin and from personal experience, would recommend that you be patient with your blood sugars, as sugars as high as you have had take a few days to significantly improve even on insulin. Even though your appointment isn't tomorrow, you should be able to phone your diabetes team and ask them for a carb calculation starting point.
    You probably should ignore what was given to me but I was told that the bulk standard starting point, given by my diabetes nurse, is 1 unit of fast-acting insulin covers 10 grams of carbohydrates. My specialist gave me a different ration of 0.5unit of fast-acting insulin covers 10 grams of carbohydrates. So I found it was just a bit of a science experiment with a glucometer. Make sure you are testing with a glucometer before each meal and two hours afterwards to get an idea of how your calculation varies from this starting calculation (I also do 3 hours and 5 hours afterwards as I have a CGM). I split the short-acting insulin dose and have two-thirds before my meal and one-third afterwards as I was nervous (and still am) about using short-acting.
     
    • Like Like x 4
    • Informative Informative x 1
    #3 ert, Aug 4, 2019 at 1:00 PM
    Last edited: Aug 4, 2019
  4. EllieM

    EllieM Type 1 · Well-Known Member

    Messages:
    1,581
    Likes Received:
    952
    Trophy Points:
    153
    They need to reduce your blood sugar slowly for 2 reasons
    1) if you increase your insulin too rapidly you run the risk of too low blood sugar (hypo) which is very risky in the short term (potentially lose rationality and then consciousness)
    2) I believe that a gradual reduction is safer for organs such as your eyes.

    Have they given you any advice about quantities of carbohydrate in meals? Long term, they'll adjust your lantus so that your morning level roughly matches your before bed reading, and they'll calculate both an insulin to carb ratio for meals and a correction factor for reducing your levels if they are too high. But everyone needs different quantities of insulin, specially given that your pancreas is probably still pumping some out, so they'll need some data before they can work out your levels.

    I believe that
    www.bertieonline.org.uk

    has some good resources for new (and old) T1s.

    I doubt that the OP is having 120g per meal so suspect that this is not the ratio used by his nurse.... And honestly, this ratio can vary massively between people and even at different times of day for one person....
     
    • Like Like x 2
    • Winner Winner x 1
    • Informative Informative x 1
  5. Diakat

    Diakat Type 1 · Moderator
    Staff Member

    Messages:
    4,277
    Likes Received:
    3,583
    Trophy Points:
    198
    You could try calling them tomorrow and mentioning the numbers. See if they suggest adjustments.
    As others have said, it is better to come down slow.
     
    • Like Like x 1
    • Agree Agree x 1
    • Winner Winner x 1
    • Informative Informative x 1
  6. MeiChanski

    MeiChanski Type 1 · Well-Known Member

    Messages:
    1,483
    Likes Received:
    839
    Trophy Points:
    133
    Hello, welcome to the squad!
    I don't know how things are in T1 diagnosis nowadays because I was diagnosed at a quite young age in 2001. I saw the DSN few days into my diagnoses at the children's ward. So I cannot comment but I am sorry you feel abandoned. I guess things take time for you to settle, of course high numbers are a cause of concern, keep testing, stay hydrated and test for ketones. As some have said, they probably gave you those units as a starting point so you don't risk going hypo until you have seen your diabetes team. I hope you do have a contact number to ask for some help for the time being.
    I'm glad you're keen on carb counting but I think it'll be a juggle before getting onto that stage, first priority is trying to get those numbers down.
    @ert I think the two hour point is too soon in some cases because OP's novorapid is in the system for 4 hours, if you're telling OP to check at two hour mark it'll be high because it's either insulin hasn't kicked in yet to catch up with food or food has just started to digest, also some people rage bolus at the 2 hour mark ending in a hypo. A guideline would be to wait 4 hours before making a correction.
     
    • Like Like x 2
    • Informative Informative x 2
    • Agree Agree x 1
    • Winner Winner x 1
  7. KK123

    KK123 Type 1 · Well-Known Member

    Messages:
    1,414
    Likes Received:
    992
    Trophy Points:
    173
    Hi there, I was in your position two years ago, let out of hospital on 3 x fixed doses of insulin on the basis that my 'normal' food amounted to 3 meals a day of around 30 carbs each. The Hospital diabetes team have to start somewhere and given how unique everybody is they are virtually having to guess how much insulin you will need per amount of carbs. My Nurse said they also based it on your weight. Please don't rush into altering things yourself or based on what long standing diabetics find works, you will probably have NO idea of how insulin actually works never mind what split dosing and insulin stacking is.

    Everyone on this site is extremely helpful but I would say take your time (probably over the next 3 months at least) and you will then get to know what works for you and how different food affects you and how to adjust insulin doses, etc. In the meantime you (should) have instant access to a Diabetes Nurse that you can call whenever you want, I called mine daily for the first month or more! If my glucose levels were high over a day or 2 she would tell me how many units of insulin to increase, if they were low (which they were mostly) she would tell me to decrease it by a unit or two. Once I was confident I was able to do those adjustments myself but only AFTER a few months following my diagnosis.

    As others say, it is a marathon, not a sprint and this is oh so true. Your diabetes Nurse is there to explain things to you and to contact you regularly in the first few weeks but I am conscious this is not true for everyone.

    After leaving hospital I am ashamed to say I was a bit pathetic and barely left the house, I kept thinking I was going to have a hypo in public. Now, I laugh at how I was back then. Once the first couple of months was over, I had a better idea of how certain foods affected my glucose levels. I pared everything back to very low carb (taking account of insulin dosage) and made notes of everything. Then I gradually increased the carbs until I got to the point where I (mostly) know what insulin I need for what meals. I won't mention how exercise, stress & work factored into this because you must be overwhelmed already. It does feel like an abandonment when you get thrown out of hospital with life saving medicine and no real idea of how to use it but remember, do not rush, experiment with plenty of tests and RING your diabetes Nurse whenever you need to to discuss your readings and get their advice. x
     
    • Agree Agree x 3
    • Winner Winner x 2
    • Like Like x 1
    • Informative Informative x 1
  8. ert

    ert Type 1 · Well-Known Member

    Messages:
    680
    Likes Received:
    666
    Trophy Points:
    133
    A guideline would be to wait 4 hours before making a correction.[/QUOTE]
    This advice would have probably taken away the stress of how I started a month ago. Thanks. Useful.
     
    • Agree Agree x 2
    • Like Like x 1
  9. ert

    ert Type 1 · Well-Known Member

    Messages:
    680
    Likes Received:
    666
    Trophy Points:
    133

    This is really helpful, in explaining what they're trying to achieve in the first weeks. I didn't know this and dived into calculations and monitoring in the first hour, which wasn't necessarily a good thing. If they'd explained the strategy of what they were doing, I may have been somewhat less frantic. Only somewhat, as I'm frantic by nature.
     
    • Hug Hug x 3
    • Like Like x 1
    • Agree Agree x 1
  10. Pilgrimmick

    Pilgrimmick · Member

    Messages:
    11
    Likes Received:
    5
    Trophy Points:
    3
    Thanks to everyone for the replies, did not expect sooooooo much support.
    It is reassuring to know that a lot of what I have suspected is true. Also did not consider risks of lowering blood sugar rapidly, to me it seemed sensible to zap it with a few big doses and start from the new low level.
    I have none the ‘Bertie on line’ course so have that sorted n my head. Also have downloaded the carbs and Cals App. Have been adding regular meals to that to give me an idea of carb intake.
    Keeping a log of Blood glucose, insulin, carb intake and blood pressure, hopefully this will come in useful when it see the nurse.
    May start testing four hours after meals, but that almost works out he same time as the before eating test!
     
    • Like Like x 2
    • Optimistic Optimistic x 2
  11. Daibell

    Daibell LADA · Master

    Messages:
    10,650
    Likes Received:
    6,649
    Trophy Points:
    298
    Hi. Yes, you will have been started on a safe level of insulin. After a week or two you can start to balance the Basal and start carb-counting with guidance from the nurse. If your BMI is a bit on the high side you may also want to control your carbs to avoid weight gain.
     
    • Like Like x 1
  12. becca59

    becca59 Type 1 · Well-Known Member

    Messages:
    1,388
    Likes Received:
    1,843
    Trophy Points:
    178
    This advice would have probably taken away the stress of how I started a month ago. Thanks. Useful.[/QUOTE]

    I started carb counting from day 1 with a low ratio. Interestingly I didn’t start correcting out of range numbers for 2 years. Hard to believe now, but still managed to reduce HBA1C to low 50s It is all about reducing everything slowly to enable your organs to remain healthy, particularly your eyes.
     
    • Winner Winner x 2
    • Like Like x 1
    • Informative Informative x 1
  13. Pilgrimmick

    Pilgrimmick · Member

    Messages:
    11
    Likes Received:
    5
    Trophy Points:
    3
    My BMI is 29, but I need to gain some weight as I am a big build, (not just fat) need to put on another stone/stone and a half.

    Want to do some exercise, but blood sugars too high according to the guidelines I have been given, ie 16 mmol/l
    Just generally frustrated at not being able to do more.
     
    • Hug Hug x 3
  14. Japes

    Japes LADA · Well-Known Member

    Messages:
    1,061
    Likes Received:
    2,535
    Trophy Points:
    178
    Welcome to the forums.

    Did you lose weight before being diagnosed? You well might find some of it goes back on again now you're on insulin. My weight is pretty steady again now, but I put on a stone very rapidly in the first 10 days or so.

    I was utterly frustrated by the first few weeks of wanting to be able to carb count, but tied to a fixed dose of fast acting with meals, but I did get it was worth bringing my levels down slowly and carefully.

    I'm not a great sports playing or gym-going kind of exerciser, but I do love walking and I've just looked back at my records to see I was back at my usual levels of walking within a week of being on insulin. Though it took longer than that to work out how things other than food affected me - I'm still learning that one, 16 months later, and expect it to be a life long learning!!
     
    • Like Like x 2
    • Agree Agree x 1
    • Useful Useful x 1
    • Creative Creative x 1
  15. Pilgrimmick

    Pilgrimmick · Member

    Messages:
    11
    Likes Received:
    5
    Trophy Points:
    3
    Just been given permission to administer corrective doses. Have been told by the DSN that 1 unit of Novorapid will bring my readings down by 3mmol.
    Was at 19.3, so 19.3-7=12.3 therefore 12.3 requires 4 units.

    Four units taken.


    My only concern is that I believe that my corrective dose will only lower my readings by 2mmols

    I take 18 units of Lantus and 36 unite of Novorapid a day, therefore 100 divided by 54 units equals 2mmols, or have I misunderstood calculating corrective doses?
     
  16. slip

    slip Type 1 · Well-Known Member

    Messages:
    3,110
    Likes Received:
    4,923
    Trophy Points:
    198
    I'm not going to comment on dosage amounts. But what I will say is keep testing your bloods before and 2hrs after a meal, and what you ate/drank and the amount of carbs you thought it was, basically keep a diary of everything! log it somewhere - it will help you and your diabetes team to come up with better ratios and understanding how your diabetes affect you. Don't try and run before you can walk.

    All the best.
     
    • Agree Agree x 1
    • Useful Useful x 1
  17. Pilgrimmick

    Pilgrimmick · Member

    Messages:
    11
    Likes Received:
    5
    Trophy Points:
    3
    Thanks.

    I am keeping a diary with carb intake, timings, glucose levels etc. Have my first meeting with nurse tomorrow so hopefully she can give more guidance.

    On a positive note my blood glucose was in single figures for the first time, 7.8. Now to fine tune it with diet, as I am still on fixed doses of insulin.

    Feeling much better now the levels are lower, it is amazing how **** you can feel without realising it until you feel better.
     
    • Like Like x 2
    • Agree Agree x 2
  18. JMK1954

    JMK1954 Type 1 · Well-Known Member

    Messages:
    233
    Likes Received:
    133
    Trophy Points:
    83
    Glad you'e feeling better. Now that it's dropping to a much lower lower level, have you decided what sort of fast-acting sugar you are going to carry around with you, or grab if your levels drop too far ? You need something always in your pocket or bag, or preferably in both. In some situations you leave your coat in a cloakroom, but take your bag with you. It's much easier to think it out in advance than be faced with feeling hot, sweaty and panicked and having to walk to get your hands on the stuff in an emergency.
     
    • Like Like x 1
    • Agree Agree x 1
  19. Pilgrimmick

    Pilgrimmick · Member

    Messages:
    11
    Likes Received:
    5
    Trophy Points:
    3
    Yes, into town tomorrow and do a shop. Getting glucose tablets, and energy bars.
    The bars for the car, house, coats. Tablets for trousers and coats.
    All very new to me. Not managed to get the glucose down to target figures yet, so hypo seems a long way off, but suspect it is now when I am trying to reduce levels that I am most at risk.
     
    • Like Like x 1
  20. MeiChanski

    MeiChanski Type 1 · Well-Known Member

    Messages:
    1,483
    Likes Received:
    839
    Trophy Points:
    133
    I'd say party size cans of coke, gluco tabs, mini bags of haribos, small packets of oreos or any biscuits or gluco juice - more expensive, but more effective than coke and juice.
    I'm glad you're doing better, there is lots to learn and we are all rooting for you. :)
     
    • Like Like x 1
    #20 MeiChanski, Aug 5, 2019 at 5:28 PM
    Last edited: Aug 5, 2019
  • Meet the Community

    Find support, connect with others, ask questions and share your experiences with people with diabetes, their carers and family.

    Did you know: 7 out of 10 people improve their understanding of diabetes within 6 months of being a Diabetes Forum member. Get the Diabetes Forum App and stay connected on iOS and Android

    Grab the app!
  • Tweet with us

  • Like us on Facebook