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Nightmare diabetes appointment

Discussion in 'Type 1.5/LADA Diabetes' started by smidge, Dec 10, 2014.

  1. smidge

    smidge LADA · Well-Known Member

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    Hi Elaine!

    I didn't understand it at all at the start either - not sure I really do now TBH! You just sort of get used to it by trial and error really. If the mixed is working well for you, which it does seem to be, then that's great. I wouldn't change a regime that's working. Hopefully it will carry on working for you for some time. I think at the moment you will be producing quite a bit of your own insulin still - probably more since starting on insulin - injecting insulin seems to cause our pancreases to burst back into production for a while - goodness knows why!

    Unfortunately, my experience was that although I managed really well and really easily on two shots a day of Insuman basal for a little while, the excellent control I had with that regime didn't last and the Apidra bolus was added to cover meals. That all worked well for a couple of years and then the control got harder so the Insuman was swapped for Levemir - and the control went down hill from there really. Obviously, I don't know if the difficulty of control matched my own insulin production declining or whether Levemir doesn't work very well for me, but it's been a very hard battle to keep my HbA1c good for the last year at least and recently I've really struggled to keep even a modicum of consistency in my BG. I've never tried the mixed insulins, so I am interested in how you get on with them over the next year or so. I know a couple of LADAs who manage really well on just basal and have done so for a few years combined with low-carbing, but one of them has just decided to start using a bolus as his levels are rising. I don't think I know any other LADAs who have used the mixed insulins, so it really is interesting to see how well it seems to be working for you.

    Smidge
     
  2. LucySW

    LucySW Type 1 · Well-Known Member

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    Make that two, Smidge. Just took my first Novorapid - with my first full meal for days!

    Perhaps it'll turn out to have been a bad cold that sent my baseline levels up to 8 over Christmas ( with barely any food of any description, complain complain), but trying this for a bit now. Hoped I could manage just on basal, but it seems not.

    Never mind, just relieved to have what I need.

    Lucy
     
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  3. Bill1963

    Bill1963 Type 2 · Member

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    make that 3 then lucy. I've been taking novorapid to cover my meals this xmas. I'm hoping its the change of regime that is causing it and once I get back to work and more active things will return to normal ( whatever that is ).
     
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  4. smidge

    smidge LADA · Well-Known Member

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    Lucy, Bill, the extra injections for food are a bit of a pain, but nowhere near as bad as you might think initially. At first, you're there with your scales and your book with the carb values of everything in - it used to take me 15 minutes to work out what to jab for what I was eating and I used to think 'I can't do this for the rest of my life!' but after a few months you just know the carb values of the things you eat the most and you know what certain foods and volume of foods do to your BG so it all becomes easier. In the end, it's better to do the extra jabs than keep spiking high every time you eat.

    Did either of you consider looking at using the insulin Elaine is using or did you just go straight for adding the bolus to the basal?

    Smidge
     
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  5. LucySW

    LucySW Type 1 · Well-Known Member

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    No, I wanted the flexibility. I'm a bit scared of insulin anyway, and I couldn't have managed eating to a pre-fixed dose. I don't schedule things well. And I'd want to low carb and be scared about putting On weight. (Fat chance of that - I've low carbed so much to get my levels down I'm now beginning to be scrawny, not a good look boo hoo)
     
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  6. Bill1963

    Bill1963 Type 2 · Member

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    Thanks for the advise smidge, lucky i've had over a year to get ready for this. so the diet is pretty much sorted out now. 30g of carb a day been able to regain my weight thru eating more fat. Its just the inconvenice of being a builder ( one minute very physical the next resting ) and then finding somewhere to inject, building sites aren't very clean places. Still needs must at least i've got some control of it now.
     
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  7. LucySW

    LucySW Type 1 · Well-Known Member

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    Thank you Smidge. I feel relieved about it. I just want no more highs. (Or high highs, or highs I can avoid.) As well as of course only light diabetes, nothing horrible happening, no total weirdnesses, no weird hidden infections that Bernstein keeps talking about, etc etc. Whether I'll get any of that, who knows, and of course it's lovely while we think we have control, but usually it's just a nice comfy illusion in my D experience so far. The thought of spending a day ploughing through Gary Scheiner and Noblehead's Bdec course is ghastly - I'm too busy curled up on the sofa reading my spouse's excellent Christmas thrillers (chosen by me). But I'll do it of course and be very grateful.

    Oh dear, you can see: my experience of D to date has made me into A Grump.

    What I really wanted to say was, Yes I bet you're right. And I'm relieved to have what I need. And the Libre. So it's going to make things better.

    Thank you!

    Lucy
     
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  8. elaine77

    elaine77 · Well-Known Member

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    The one i'm on at the moment is apparently 70% fast acting and 30% basal. The weight gain is awful though, I've put on a stone since starting insulin mid-October and because it's mixed I sometimes have to eat when I'm not hungry just to cover the fast acting. This is not ideal.

    On the other hand though my hba1c for sept-dec has come down from 86 to 55 and the insulin didn't start til mid-October so that hba1c will have caught some pre-insulin levels and so should hopefully be lower next time when it will cover only insulin-taking time periods.

    If I can't stop the weight issue I will have to change my regime because I haven't rly changed my diet since starting insulin and have still put on weight :-(

    My cholesterol was 4.6 too which they said was normal but I'm not convinced... I'm sure it was lower than that before I put this weight on!
     
    #188 elaine77, Dec 30, 2014 at 2:54 PM
    Last edited by a moderator: Dec 30, 2014
  9. smidge

    smidge LADA · Well-Known Member

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    @elaine77 - that is a lot of weight in a short time.! I knew you were struggling with putting on weight but I hadn't realised it had got to that level. You must be getting really p****d off with that! I'd be going mad!

    Insulin will put weight on you if:

    1. You had lost a lot of weight prior to insulin because your BG was high and the food you were eating was getting peed out instead of converted to energy. This is a tricky one, because it might be that you were always eating more than your body needs, but the lack of insulin meant it wasn't being converted to energy and therefore not laid on as fat.

    or
    2. You are taking too much insulin for what your body needs. Your levels suggest this isn't the case (unless you are constantly eating to keep up).

    or
    3. You're eating too much for what your body needs. You haven't changed what you eat but see point 1. above.

    Trouble is, looking at your good levels, you'd either need to increase the exercise to use more energy (which would mess with your insulin doses) or eat less (which would also mess with your insulin doses). The only other option I can think of would be to change to MDI to tailor your insulin a lot more - but that clearly also messes with your insulin doses!

    You need to discuss this with your diabetes team, because putting on weight will eventually also mess with your insulin regime! The trouble you'll probably have is that they might not believe you're not overeating. In your situation, I think it's important that you write down everything you eat and its rough calorie and carb level. You'll need the carb level for matching any new insulin regime, so the better your data the easier that will be, but you'll need the calorie level to show you're not simply eating too much. I think some of the other guys use apps like MyFitnessPal for this type of thing - I've never bothered about my calorie intake, so I can't advise on that.

    Don't just put up with it though. Insulin does not have to mean putting on weight.

    Smidge

    p.s. I meant to say that your cholesterol levels are pretty meaningless without the full lipid breakdown. The ratio of good to bad cholesterol is the key measure, not the overall cholesterol level. If the overall level has gone up but bad cholesterol has gone down and good cholesterol has gone up, then an overall increase is a good thing within reason. I'm not very good at interpreting cholesterol, but that's how I see it.

    Smidge
     
  10. LucySW

    LucySW Type 1 · Well-Known Member

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    From what I've read recently, it's the triglycerides level that is key. Basically the nearer the triglycerides to 1.0, the better. A low triglycerides figure (1.0-ish rather than 1.8 or 2) indicates that most of the LDL, what we used to think of as bad cholesterol, has converted into the large fluffy kind, which is what we want and is benign. Small and dense LDL is the very bad kind, the clear correlate of cardio-vascular disease. SDLDL apparently isn't always shown separately on the lipids profile, but it can be deduced from the triglycerides level.

    That's apparently current thinking, but have a google.
     
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  11. smidge

    smidge LADA · Well-Known Member

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    Well, the new insulin regime seems to be steadying my BG levels down. I thought some of you might be interested in the stats from the last couple of months. The data has been taken from averaging and SDfromMeaning the continuous glucose data from my Libre. I started the Libre device on 22 October and changed Levemir to Insuman Basal for the evening basal jab on 10 December. So:

    October 22 - 31 - Average BG = 7.2; SDfrom Mean = 2.2
    November 1 - 30 - Average BG = 7.2; SDfrom Mean = 2.3
    December 1 - 31 - Average BG = 6.6; SDfrom Mean = 2.0

    My fasting BG is now consistently 5 to 6.8mmol.

    I'm hoping this isn't just because I've been off work for the last couple of weeks!

    Smidge
     
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  12. Erin

    Erin Type 2 · Well-Known Member

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    I think that diabetes is a very complicated disease and requires endocrinological monitoring and maybe even hospitalization. Wouldn't it be nice if we had Diabetes Clinics?
     
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  13. smidge

    smidge LADA · Well-Known Member

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    Ok, so I think I love Insuman Basal.

    Typical fasting when on Levemir twice a day - a week in early December: 9.6, 9.8, 11.8, 10.3, 15.5, 8.6, 15.2
    Typical fasting on evening Insuman - the last week: 6.3, 5.5, 6.2, 5.9, 6.5, 8.1, 5.8, 5.4

    What a difference! My graphs are really flattening out now that I'm not dealing with the mad fasting levels. I'm not having to take pre-breakfast correction bolus, so I'm not dropping low mid morning and having to correct hypos causing spikes.

    I just wish I'd switched back earlier. The moral of the story is to have the courage of your convictions - if something isn't working insist on trying something else!

    Smidge
     
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  14. LucySW

    LucySW Type 1 · Well-Known Member

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    Yes, I'm very happy on Insulatard. It seems to work very gently but effectively. And I've never yet come near hypo-ing. Long live old-fashioned insulins!

    Isn't it great to wake up to a good blood level !!
     
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  15. Bill1963

    Bill1963 Type 2 · Member

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    For me things have settled down now that I'm back to work. Just on basal insulin again have had to stop the novrapid.Have been tinkering with my diet and that has cost me a couple of kgs. Oh well back to the drawing board moral of the story is don't take holidays.
     
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  16. smidge

    smidge LADA · Well-Known Member

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    So, today I went back for my 3 month review - what a different experience than the December one! I was back at my local hospital instead of the major city one I visited in December - same consultant but a much more positive experience all round. I have been on Insuman basal evening and Levemir morning for 3 months now and whereas my control was shot to pieces and my HbA1c had risen to 5.9%, it is now back to 5.5% and the huge swings from high to low are greatly reduced. My fasting levels still tend to be a little unpredictable - 5.5, 11.2 and 4.8 in the last three days. So, I start on Tressiba this evening!!! I think I need some advice from @robert72 and @drahawkins_1973 on how to phase in such a long-acting insulin when I've already had 7 units Levemir this morning!

    All in all, a much happier Smidge!
     
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  17. robert72

    robert72 Type 1 · Well-Known Member

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    @smidge are you replacing both the Levemir and Insuman with Tresiba?
     
  18. smidge

    smidge LADA · Well-Known Member

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    Hi Robert, yes - going down to just one basal - how novel LOL - and one basal injection a day. I'm not sure whether this should be morning or evening given that I've always split the basal dose before. I've had 7 units Levemir at 6.30am this morning - and I think that will be more or less out of my system by this evening. I would normally take 5.5 units Insuman at 10pm. So a combined dose of 12.5 basal per day. I'm tempted to go for 10 units Tressiba at 10pm and see how that goes. What do you think?

    Smidge
     
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  19. robert72

    robert72 Type 1 · Well-Known Member

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    To be safe, I would go for 9u and titrate from there (that's just under 75% of your current basal). I'm sure your Levemir will be pretty much spent by the time you take the Tresiba.
     
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  20. smidge

    smidge LADA · Well-Known Member

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    Thanks Robert. 9u at 10pm to start with then!

    Smidge
     
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