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Hello - Type 1 Newbie

Discussion in 'Greetings and Introductions' started by cypriot_enigma, Oct 6, 2021.

  1. cypriot_enigma

    cypriot_enigma Type 1 · Newbie

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    Hi All,
    I've recently been diagnosed with type 1 diabetes (awaiting antibody test results but my ketones were 7.3 when I went to A&E and I am 29 and not overweight so the diabetes team are pretty sure it's type 1) following a stay at the hospital and a HbA1c of 171mmol/mol.

    My diagnosis story:
    I've had symptoms of being overly thirsty and weight loss for a few months, it came after 8 months of me doing at least 100km on a stationery bike each week so I naively assumed that it was a delayed affect of that after I stopped cycling as much in June.

    I eventually called the GP and the clinical pharmacist sent me for a blood test on Thursday 23rd Sep, they results came back the same day however no appointment was booked until Monday 27th Sep although I later found out there was a note saying to book a appointment within 48 hours. I'm the meantime my parents and I bought a blood glucose machine where I consistently tested >20 mmol/L. So my family got my to call (I was fairly reluctant at the time labouring under the assumption if it was serious the GP would have scheduled an urgent appointment) decided to ring 111 who advised me to go straight to A&E where I was diagnosed and put on an insulin drip.

    Currently:
    I'm on Levemir as my long acting insulin and NovoRapid as my rapid acting. I've been told to take 8 units of Levemir twice a day (breakfast and bedtime) and 5 units of NovoRapid before meals. The initial advice was to eat as normal, following my meeting with the dietitian on Monday they said to aim for about 50g of carbs per meal so I don't have to vary my rapid dose. My current assumption is to just do 1 unit per 10g of carbs if I do vary my carbs in a meal but I'll learn more once I go on since courses get more information on how my blood sugar is affected by certain foods

    They also have me some targets to aim for:
    • Before breakfast: 5.5 - 7.5
    • Before lunch: 4.5 - 7.5
    • Before dinner: 4.5 - 7.5
    • Before bed: 6 - 9

    Currently I tend to be outside these ranges however my results recently have generally been below 10. I have had a couple of readings below these values but high enough not to experience hypo symptoms.

    Since I was in hospital my eyes have changed, they're better than they were not still bag enough that staring at a monitor for work is difficult and my glasses are unusable.

    I've also been tracking my foods using myfitnesspal which has been useful to try and hit my carb goals.

    Questions:
    • When first diagnosed would the tendency be to have your blood sugar a little high? For instance, my reading before bed last night was 6.7 however I tend to be much higher in the evenings and it comes down a fair bit so I ended up having a piece of toast with peanut butter as I'm not really sure yet how Levemir affects my blood sugar. This morning before breakfast I was 9.3 so it has gone up but not off the scale.
    • I've read that it can often take about a month for eyes to revert back to how they were. It's this a gradual thing or will I wake up one day and my eyes have completely reverted back?
    • How do you decide how to adjust long acting insulin?
    • How did you cope with the lack of data when you were first diagnosed? I'm hoping to get a freestyle libre so I have a clearer picture of what is actually happening rather than just snapshots.

    Everything is still a bit new but starting to get my head round it.
     
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  2. urbanracer

    urbanracer Type 1 · Expert
    Retired Moderator

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    Welcome to our gang, it's a lot to take in isn't it.

    It can take a while for your body to adjust and you should let your average glucose level come down slowly. If you've been 'high' for a while then you may experience false hypo events without being technically hypoglycemic and these events can feel pretty awful - nice and easy does it!

    Eyes - your brain is trying to make sense of the world viewed with a distorted iris. You probably will just notice one day that you don't have to squint to read sub-titles on your favourite Swedish murder mystery.

    Your body may take a couple of days to show the effects of changing long acting insulin doses so go up or down a couple of units (under the advice of a medical professional - of course) and see what happens. Change again after a couple of days if you don't have the desired result. Many of us find that we require less long acting (basal) insulin in hot weather and warmer climates so don't be surprised if your basal requirement fluctuates a little over time.

    There's never enough data. A Freestyle Libre will help to identify trends and it's a fantastic tool for glucose management. But be prepared for times when your body responds in an unexpected way and you will wonder why you are hypo or hyper, "this didn't happen last time" is one of my most overused phrases - maybe you will have more luck than me.

    Good luck and keep asking questions.
     
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  3. ert

    ert Type 1 · Well-Known Member

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    Welcome. Data is everything. I self-fund a Dexcom which alarms when I'm out of range and it means I don't have to finger prick so often. I'm on a split dose Levemir also and skip meals (or eat low carb) to check to see if my dose is correct. My blood sugars hold a straight line if it's the dose is correct. Good luck. Keep posting questions.
     
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  4. Daibell

    Daibell LADA · Master

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    Hi. You have obviously done a lot of research already which is good. To roughly get the Basal right you need to have several hours without eating and see whether your BS goes up or down. It's not quite so easy with a split dose but you will find over time that you will inject different amounts in the morning and evening. The job of Basal is to balance the background glucose output from the liver. If you can self-fund a Libre 2 you will find it brilliant. I've been using it for a few months now and it's amazing. Eventually you may get NHS funding for it. BTW most people are started on a safe insulin dose so they are a bit high rather than going near a hypo. As you gain experience you can get your BS lower. Libre 2 has Alarms which I find really useful.
     
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  5. In Response

    In Response Type 1 · Well-Known Member

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    I have found it MUCH EASY to adjust my basal with split doses.
    Previously, the assumption that my basal needs were the same 24 hours a day made it impossible to get the correct dose.
    The flexibility of split doses makes things much easier - you just need to basal test at different times of the day.
     
  6. cypriot_enigma

    cypriot_enigma Type 1 · Newbie

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    Hi All!

    Thank you so much for the advise and reassurance. I'm not sure I'm quite ready for basal testing yet but it is definitely something I am keen to test once everything is more settled and I have more time to process everything. Currently the insulin seems to be controlling the blood sugar levels well although I am a little bit concerned about hypos so I'm generally a little worried if I'm on the lower end of the normal range.

    Still in a bit of shock especially as my HbA1c was so far out of the normal range but since diagnosis my diet has much improved so I'm hoping that it will drop down to a less frightening level in a few months when I have the next one.
     
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  7. In Response

    In Response Type 1 · Well-Known Member

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    It is early days so not surprising your HbA1C is high.
    Regarding diet, please be aware that insulin is the tool your body needs to manage carbohydrates and you are in control of the insulin. People with type 2 diabetes often follow a low carb diet. Type 2 is a different condition to Type 1. With Type 1, a healthy diet does not need to vary from the healthy diet you would have without diabetes. If you enjoy bread - most of us with Type 1 continue to eat bread. If you like cake, and chocolate eat cake and chocolate but be aware you will put on weight in the same way you would if you ate cake and chocolate without diabetes. I eat pasta and rice and potatoes and bananas and pizza and ... with no guilt, no weight gain and a good diabetes management.
     
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  8. KK123

    KK123 Type 1 · Well-Known Member

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    Hi there, wow, what an introduction to it all. My scenario was very similar but I was in my 50s. You are doing everything right at this time, taking it a little slowly, finding out all you can about how it all works and communicating with your Diabetes team. I didn't leave the house for a month because I was afraid I would fall over from a hypo, so I panicked if my levels went below 6! I laugh about it now nearly 4 years later but only because I now have 4 years of knowing how my body reacts to things and knowing what to do when things go 'wrong' and ways of preempting issues.

    Even now though I can easily get caught out as trying to emulate a working pancreas which drips and stops insulin every second of every day to maintain the balance is impossible. You will get lots of really good advice and techniques to use here but you don't have to jump straight to them right now, in my opinion the best thing in the first few weeks is to gain as good an understanding as you can about how it all works, the basics if you like, how the different insulins work and how food comes into it. Also, don't necessarily change your diet dramatically at this time as the team will be trying to gauge your ratios/whether you are in a honeymoon period and producing some of your own insulin, and the data you provide them will be crucial.

    At some stage you will then be able to work out what strategy you want to adopt. My hb1ac at diagnosis was just below yours, I had never worn glasses but my eyes went blurry after my first dose of insulin whilst in hospital, and remained that way for a good 3 months. Then they went back to normal and I still don't wear glasses.

    Just by your post I can see you've made a fantastic start to a condition that is life changing, one you can never forget about 24/7 and incorporates so many things to consider. Please let us know how you get on.
     
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  9. Circuspony

    Circuspony Type 1 · Well-Known Member

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    Eyes were fun with me. I've been short sighted for over 40 years but after starting on insulin I had nearly 20:20 vision for a couple of weeks. Sadly didn't last. My opticians were great and saw me a few times after diagnosis because my astigmatism was all over the place. I had a lot of disposable contact lenses in different prescriptions.
     
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  10. Ellierose2

    Ellierose2 · Newbie

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    hello. I am struggling with type 1 hugs
     
  11. Jaylee

    Jaylee Type 1 · Moderator
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    Hi,

    Could you please clarify what insulin & regime you currently use.?
     
  12. Trevor vP

    Trevor vP Type 1 · Well-Known Member

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    Welcome to the forum.

    Type 1 is a marathon not a sprint.

    You have time to learn and your body to adjust.

    You will learn how to adjust your own Bolus (Rapid Insulin) over time for food combinations and exercise and the diabetic team and you will work out your correct Basal( Long acting).

    When you feel ready to exercise a bit again reach out and I am more than happy to share what I do on reducing my Bolus for exercise.

    All I can say is learn as much as you can about Carb counting get either the Carb and Calc book (buy once) or the Carb and Calc app ( I believe now on subscription). Easiest way to learn.

    Document test and document, non of us are the same so you will need to build your own structure. Insulin for type 1 is one of the few medicine doctors allow us to vary and control ourselves.

    Example of testing and learning :
    BG 6 before food ate 50 Grams of carb had example 5 units Bolus went for fast walk had Hypo at 25 mins .... you now you probably need to reduce Bolus by 15% before walk or take 10 Grams of your breakfast with you and eat it at 15 mins in...

    Always always have your hypo treat on you not in the car or in the house when you out walking. Fast acting glucose. In the beginning probably even good to walk with your meter so you can double check false hypo vs real hypo ( sometimes happen when you been high for a longtime)

    Good luck and best wishes
     
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