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When is the right time for insulin

Discussion in 'Type 1.5/LADA Diabetes' started by Millie74, Apr 17, 2021.

  1. Millie74

    Millie74 · Well-Known Member

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    I was diagnosed with LADA in November 2019 after ssking for GAD antibody test and c peptide. GAD 1700. C peptide 600. I had a telephone consultation with consultant May 2020 because of the pandemic. She said it was ok to carry on low carbing as had got my hba1c down to 48mmol. She said have 50g carbs minimum or may go into DKA. I haven’t had a consultation since, so called the number she gave me for the hospital diabetic nurse incase numbers shot up. I told her my fasting is generally 8 now. They know my last hba1c was 50, but nurse said I’m masking it with low carb and gave me an appointment to see them about insulin on Friday. They said it’s an autoimmune disease, which of course I understand. Not keen to go on insulin. I teach Dance. Worry about hypos etc. Any thoughts please? Up in middle of night worrying. I called them as it’s been a year since first consultation in phone since LADA diagnosis and was worried not being monitored for insulin, as was told would be. I kind of regret calling now. Not sure if that’s silly though. Want to do right thing for health.
     
  2. Jaylee

    Jaylee Type 1 · Moderator
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    Hi Millie,

    You teach dance? I spent 3 years in a LTA. (Many years back.)

    With LADA, it is from my understanding a slower onset as the beta cells shut down production.
    So the low carb diet may be prolonging. But "masking," I think not.. You have had c pep & GAD tests done. Great news. Some members have reported difficulty obtaining these tests, so it sounds like you are in good hands.

    With exogenous insulin. (If prescribed an MDI regime.)
    Your basal dose when set right especially with your activity could compliment your BGs.
    You can continue to low carb or even have meals after you do what you do? With little or no fast acting insulin on board which may catch you with a low?
    I am a member of 2 bands these days & still can't perform with a full stomach, preferring to run at an optimal BG level in the evening. Not having any thing since midday one'ish. (Then I sing for supper.)
    Hypos can take the wind out of your sails. But then with high BGs you sometimes have trouble launching the boat..

    There is some great tech these days like CGM sensors that can help you pre-empt these things, thus helping you do what you do.

    Best wishes.
     
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  3. ert

    ert Type 1 · Well-Known Member

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    I refused to start insulin for 2 years after diagnosis as type 1. In the end, when I could no longer physically run my blood sugars down, I had to accept insulin.

    You are most likely to be started on long-acting insulin. I started with just 2 units of Levemir insulin in the morning and 1 unit at night. (Even though the standard recommendation is that I start with 7 units morning and night, my consultant agreed for the small doses as I was very active as a runner and was still eating low carbohydrate <30 grams a day following Bernstein and lightweight with a BMI of 19.) Ask about starting on smaller doses initially as you can always increase them when needed.

    You can exercise without worrying on long-acting, as you will not need to snack to keep your blood sugars above 4 mmol/l. I've been walking 20 km a day on the SW coastal path this week. I complete the walk only on long-acting and coffee, before breakfast (which I have been having at 3 pm) and I haven't needed to eat anything.

    It's the short-acting with meals which is tricky to manage with exercise within a window of 5 hours after taking it without snacking.

    If I had known this information, I would have started insulin straight away.
     
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    #3 ert, Apr 17, 2021 at 5:38 AM
    Last edited: Apr 17, 2021
  4. In Response

    In Response Type 1 · Well-Known Member

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    Exercise, including teaching dance is possible on insulin.
    Henry Slade plays rugby for England with Type 1 diabetes with no choice but to take insulin. He can sit on the bench for half the game and then come on the pitch at short notice for intensive exercise without hypoing.
    A planned dance class should not cause any problems.

    To be blunt, you may be causing more problems for dance by running your blood sugars high and not taking insulin.

    Many of us exercise regularly whilst on insulin without hypos.
    I strongly recommend following the advice to go on insulin (with LADA you will have no choice) and learn about how to minimise the risk of hypos.

    To answer the question you posed in the title of your post, if your fasting blood sugar in 8, I would suggest, the time to start insulin is now.
     
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  5. Millie74

    Millie74 · Well-Known Member

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    Thanks for all your advice. Sounds like long acting may help first. She said you need insulin for some carbier meals and am concerned will make me eat carbs. I’ve got used to low carbing. Don’t want to go high carb now. Could happily increase to 60g carbs a day, but don’t want to do more. I asked if as a Dance teacher I would qualify for a libre and she said not yet! To help with my fear of hypos. I only got the GAD test as asked GP if could have it. Couldn’t understand why I hadn’t reversed T2. At the moment I teach 3 hours of Dance Mondays, Wednesdays and Fridays online. 15 min breaks in between. I am worried regarding hypos. But don’t know what they are going to say Friday yet. I only had one phone consultation in May, so not great monitoring. Seeing nurse, not consultant Friday. I have to take before breakfast, before lunch, before evening meals and before bed readings. She said eat something like porridge so we can see the effect. I know porridge will be high as eliminated it. But will do it this morning and see what before lunch reading is, just the once.
     
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  6. Millie74

    Millie74 · Well-Known Member

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    Thanks, fasting has recently gone above 8 daily. Used to be between 6-8. I still think my next hba1c would be only about 55mmol low carbing, but maybe that isn’t good enough.
     
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    #6 Millie74, Apr 17, 2021 at 9:26 AM
    Last edited by a moderator: Apr 19, 2021
  7. Millie74

    Millie74 · Well-Known Member

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  8. KK123

    KK123 Type 1 · Well-Known Member

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    Hi Millie, you can eat whatever you want, high carb, low carb, or whatever. You then take your insulin in an amount that is required and keeps your levels within range. At the start of insulin usage they like you to eat what they call 'normally' which tends to be 3 x meals a day, ie, cereal, sandwich, meat & two veg for example. That way THEY can determine how your body is working and assess your carb/insulin ratio over an initial period of a few weeks or so. However, I have never eaten like this (due to shifts) so I continued to eat what was normal for me and a carb/insulin ratio was worked out based on what I did eat, after writing it all down etc. I recall when they looked at my recordings there were lots of blanks, breakfast?, don't eat it, dinner at 8pm?, well yes, busy working, etc. Once I had a general idea myself of my insulin requirements, I was able to adjust it for myself, including for exercise and a job that has me running around all over the place, sometimes sitting down, sometimes in the middle of chaos. Now, 3 years later I am still on very low units of insulin because my diet is fairly low carb. Don't be afraid of insulin as it will save your life. Of course you may be able to struggle on for a while in the honeymoon period but as you know you will need it eventually. It's simply a missing hormone. I think you will find that having access to it now (and many do say it helps your remaining beta cells get a rest) will lower your levels and give you flexibility. Yes, it may only be a unit or two given your low carbing and your dance classes, you may not even have to use much or any bolus (I don't) but a small amount of basal may keep you ticking over nicely without impacting your classes. You may wish to experiment with porridge or whatever just to test yourself, BUT remember what you choose to eat IS your choice and with lots of testing and understanding and experience I am sure you will be fine. x
     
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  9. Millie74

    Millie74 · Well-Known Member

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    Thanks for your advice. Do you think now is the right time for insulin on a 50g carbs a day diet? My numbers aren’t that bad. I was 96mmol at diagnosis, but got it down. 50mmol was my March one. I will ask about long acting. Is that called basal?
     
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  10. Millie74

    Millie74 · Well-Known Member

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    Thank you so much. It sounds like you are really busy and manage well. I do like the low carb lifestyle now, but it would be nice to have the choice to have a few potatoes at Christmas or for a meal out.

    Sounds like trying long acting (basal) may help. I hope this gets offered and not just not short acting one.

    Would it be worth me paying for the libre or will finger pricking be ok to start with.

    Thanks for your reassurance. X
     
    #10 Millie74, Apr 17, 2021 at 9:51 AM
    Last edited by a moderator: Apr 19, 2021
  11. JMK1954

    JMK1954 Type 1 · Well-Known Member

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    Yes, the long-acting background insulin is referred to as basal and that is what you are likely to be offered first.
     
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  12. Hertfordshiremum

    Hertfordshiremum · Well-Known Member

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    Hi I have had Type 1 LADA for 3 years now. Wish I knew a lot more at the start! Read Dr Bernstein Diabetes solution, it explains a lot.
    https://www.amazon.co.uk/Dr-Bernste...ords=bernstein+diabetes&qid=1618650618&sr=8-1

    If you are happy eating low carb carry on, you will need insulin though and don’t worry about taking it. Start with small amounts and definitely have quick acting insulin to hand, you probably won’t need it for every meal at the moment that’s fine, but you also will probably need it if you are ill. So get the prescription. I only needed it once a day to start with but as time goes on you will need it more, even with low carb meals.

    A Libre 2 sensor is a fantastic help, especially at the beginning when some days your body might still produce a small amount of insulin and some days not. Making no 2 days the same, it can be very frustrating as I found I could do the same thing and have completely different results. I buy from Hobbs pharmacy for £40. You will be VAT exempt, have you got your medical exemption card via the doctor or diabetic nurse yet? Also download the VAT exemption form, fill it in and take it with you when you buy the Libre 2. Push for this on prescription.
    I am sure the VAT exemption form has been posted on this site.
    Read up on this and ask loads of questions. Don’t let a nurse tell you what to eat! Sounds like you are taking great care to do the right thing.
     
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  13. Jaylee

    Jaylee Type 1 · Moderator
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    Your routine sounds a little like my younger sister's, she teaches dance & MTC stuff. (That's been online. With the COVID happening.)

    Hypos, keep fast acting carbs handy, with my gigs liquid form is easier if you are "vocal" in what you do..
    Lucozade or Coke.
    I must admit porridge for me regarding the bolusing of is a little like pizza or pasta.? I platau higher hours later.
    The current amount of carbs you say you consume daily would need less bolus to deal with. However the timing of the dose is key with anything you eat regarding fitting the working profile of the insulin to compliment how your meal is digested?
    Long acting insulin alone for me (when the basal rate is happy.) would not take care of 10g of carbs. I would need to bolus for it.

    Hope this helps.
     
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  14. Millie74

    Millie74 · Well-Known Member

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    Is it £40 a month? Thank you. Will try to be strong about wanting to carry ob low carbing. I just tested after porridge. 25g of carbs. Got 16.5. Not good.
     
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    #14 Millie74, Apr 17, 2021 at 11:00 AM
    Last edited by a moderator: Apr 19, 2021
  15. Millie74

    Millie74 · Well-Known Member

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    Thanks. I’ll see what they advise. I would like to carry on low carbing. Maybe more moderate low carb. 20g per meal ish.
     
    #15 Millie74, Apr 17, 2021 at 11:01 AM
    Last edited by a moderator: Apr 19, 2021
  16. TashT1

    TashT1 Type 1 · Well-Known Member

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    Each sensor lasts 2 weeks & I usually buy them from Abbott (the manufacturer) which are a bit more expensive but do get replaced quickly if broken. You will struggle to get it on prescription, in most areas it’s not considered required unless you have poor control or zero insulin production.

    I’ve self funded for 8 months or so & don’t regret it, just about to move up to the Libra 2. With having an active job I’d say your better off with it, maybe you can treat it as a business expense.
     
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  17. EllieM

    EllieM Type 1 · Moderator
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    Hi @Millie74. I'm an oldtimer T1, diagnosed 51 years ago as a child, so I've experienced many different forms of T1 treatment (from fixed dose insulin and no glucometers up to cgms at the present day).

    Insulin is your friend. Even those on keto diets need it to survive, and 100 years ago T1 diabetics lived for months/years on a keto diet and eventually died, because insulin wasn't available yet.

    My understanding (possibly incorrect) is that keeping your levels normal will keep your insulin production going for as long as possible.

    There are Olympic athletes with T1, you can lead an active life with it. If you start on small doses now then you can gradually work out how it affects your body. If you can afford a cgm then you can set alarms so you don't go hypo - the cgm will warn you before your glucose level goes low.

    If you want to eat low carb, then do so. There is a facebook group Typeonegrit who follow Dr Bernstein's book and you may find them helpful.

    Don't let diabetes stop you from leading the life you want but as a T1/LADA you have to recognise that insulin will eventually be part of that life.

    Good luck. You can do this.
     
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  18. In Response

    In Response Type 1 · Well-Known Member

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    @Millie74 cannot over emphasise the need for insulin.
    It is not something to be afraid of but something to save your life.
    As others have said, you will not need to give up your low carb lifestyle if it suits you but it gives you the flexibility to choose.
    It is very unlikely you will be offered “just” the fast acting insulin. We need slow acting insulin to mop up the glucose our liver drips throughout the day.
    But you may also be recommended (it is not an “offering”) to take the fast acting if you see your blood sugars rise after eating.
    Bear in mind Type 1s who eat no carbs will need fast acting insulin. It cannot be avoided.

    it is great that you are happy with your low carb lifestyle but take care. I know of Type 1 who have ended up with an eating disorder due to the obsession with reducing carbs. I am not saying this is you but with Type 1, just like insulin is nothing to be afraid of, nor are carbs.
     
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  19. KK123

    KK123 Type 1 · Well-Known Member

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    [QUOTE="TashT1, post: 2392218, member: 526953"You will struggle to get it on prescription, in most areas it’s not considered required unless you have poor control or zero insulin production.[/QUOTE]

    The NICE guidelines include many more scenarios than the two you mention but I imagine some areas are more reluctant to prescribe it. My own area do so (generally) on the basis you are pricking more than 8 times a day (for specific reasons not because you are doing it randomly), as that costs them less than numerous test strips. Certain jobs come into too, if you are not in a suitable position to do your finger pricks, ie a busy kitchen or the emergency services.
     
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  20. Hertfordshiremum

    Hertfordshiremum · Well-Known Member

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    £40 per sensor, good luck, it can be difficult and a lot to take in at the start but you will get there.
     
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