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An old timer struggling

Discussion in 'Greetings and Introductions' started by Fearless36, Jul 20, 2017.

  1. Fearless36

    Fearless36 · Well-Known Member

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    Okay so I was lucky enough to be diagnosed with diabetes at an early age (4 years) so have had it 30 plus years now. Last year, I was told that the insulin I was on (that I was injecting twice a day) was being discontinued. So they moved me onto newer insulin of Novorapid and Lantus. The catch was I went from injecting 2x a day to now injecting 4x or 5x a day depending on sugars, what I'm doing and eating etc.

    The newer insulin I'm really struggling with trying to get balanced. My body used to be really stable and the sugars were stable too. I knew exactly how to control it via food, and increasing/decreasing my dosage. However this new insulin doesn't play by the same rules at all. Im finding it a really big struggle to get stable blood sugars and they are up and down constantly.

    I spoke to my GP who basically advised to speak to my hospital diabetes clinic. I told the doctor in one session that I wanted to return to injecting twice a day. His response was that this was possible but that they wanted me to do things first and foremost like sitting with a dietician etc. Its been over 4 months, and I've chased and chased the hospital and am getting no where and feeling more and more depressed about things.

    I feel like I'm being ignored by my GP and the clinic. I phoned the British Diabetic Association to see what they would recommend - and they couldn't offer me any guidance other than suggesting maybe to try a different hospital but even that was dependent on my GP allocating or referring me to somewhere else which I don't think they are going to do.

    Its crazy as injecting 2x a day my life was really normal, and my sugars were balanced, but this 4-5 times a thing I'm finding difficult, complicated and just miserable. I hate the idea of having to carry round injections with me and having to do it that many times a day. Its a miserable existence that is just so depressing.

    Any ideas?
     
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  2. pamK

    pamK Type 2 · Well-Known Member

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    Hi Fearless36 and welcome to the site It seams as though you are having a miserable time just now There are so many people on here that will help you Take care
     
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  3. Daibell

    Daibell LADA · Master

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    Hi. You are on the best regime i.e. Basal/Bolus with 4 to 5 injections per day. As you say you need to get these balanced. Can you let us know whether you inject the Lantus once or twice a day? The first thing to do is to get the Lantus balanced. As a very rough guide given to me by my excellent DN was to check that your blood sugar in the morning is between 5 and 7 mmol. The Lantus can be adjusted up or down from there but this must be done one unit at a time and then wait 2-3 days before further adjustment; use the meter to check levels to avoid a hypo. Next are you carb-counting with the NovoRapid? That means adjusting the number of units injected just before each meal to match the carbs in the food. Typically most of us were started on 1 unit of insulin to 10gm of carbs. Again use the meter to see how you are doing; check at least 2 hours after the meal. Although Basal/Bolus is the best regime for
     
  4. Liam1955

    Liam1955 Type 2 · Master

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  5. Fearless36

    Fearless36 · Well-Known Member

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    At present I'm injecting once with Lantus, in the morning - but each time I go to the clinic I get told to switch it around. I was told to inject it at night before bed, and did that for a month and then when I returned I got told to do it in the mornings instead. I think the 4-5 x a day is too much for me, and I never had a problem prior with injecting twice a day so really want to get back to 2x a day only. That was far easier and less complicated than the Novorapid and Lantus. At the moment, I feel like things are not improving and just getting worse. Each time I inject Novorapid, I'm having to do 60 plus units. The sugars are still very high despite that. One nurse one time told me that I shouldn't be injecting more than 30 unites at a time - so it gets me crazy with these differing viewpoints and knowing what to trust and distrust. Feels like the hospital I'm at is just useless. Doctor I saw 3 months ago said he was happy to switch me onto a simplier regime of injecting twice a day but nothing has happened. I phoned his secretary chasing and got told to speak to one of the nurses, and I've chased them repeatedly for a month and still nothing. I really feel like they are providing such a bad service. Yet I am unable to do anything to push them into progressing things. My doctor told me that he would arrange for me to be seen on his clinic and nothing to date has yet been arranged.

    Prior to this I had 30 years of injecting twice a day with no problems. The 4x a day is way too much and too extreme and I feel like there is no support whatsoever from my medical team. If I hadn't had such good control prior to this, I'd probably be thinking this is the normal - but I know it isn't.
     
  6. DCUKMod

    DCUKMod I reversed my Type 2 · Master
    Staff Member Administrator

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    Hi Fearless - Do you carb count for the food you are eating, and with that adjust the amounts of insulin you take with your meals, or do you have preset mealtime doses and try to eat to match those meals?

    Most people find they have great freedom over their diet and lifestyle on the multiple injections, but clearly you are finding differently.

    If you aren't carb counting or have never been taught how to do it, that might be helpful to you.
     
  7. Fearless36

    Fearless36 · Well-Known Member

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    I don't carb count, and would like to learn how to do that, but have done the old fashion way of handfuls, I.e. a handful of protein, a handful of simple carbs and then vegetables alongside again in handfuls as that was always easier for me to measure and live with. Where could one learn carb counting? I eat pretty healthily and always have done, which is why the new insulin is definitely a problem because it doesn't respond to the rules that the older injections used to. I.e. I would eat protein first and then carbs/vegetables and could guarantee my sugars would only go up by 2 points max. So I would go from 6 to 8 immediately following a meal, and then about 3 hours afterwards I would be back on 6 again and stable. For me 6 was my kind of average blood sugar rating after non meals and before them, and it rarely went above 8.5. Nowadays I'm finding despite injecting say 80 of the novorapid, my blood sugars are now 13 plus and that isn't good to me. The diabetic clinic I am at - just aren't listening or supporting me as they should be doing and I am worried about the sugar imbalances more than they seem to be.
     
  8. azure

    azure Type 1 · Expert

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    @Fearless36 Theres nothing wrong with twice a day injevtions if you prefer it and have good sugars. I would push your clinic further.

    But can I ask what you mean by "handfuls"? I started in twice a day insulin and was taught to count carbs then becuse the set doses of mixed I suoin required a certain amount of carbs.
     
  9. fletchweb

    fletchweb Prefer not to say · Well-Known Member

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    \

    Fascinating situation you find yourself in only because I have a similar story - I too was diagnosed at 4 and I'm 55 yrs old now. The time where my diabetes was most "out of control" was when I changed insulins. I went to Humualog and Lantus and it was obvious to me that my doctor was basically telling me what the marketing material said about those insulins.

    My whole diet and insulin regime had to change with no help from the mis-informed health experts. It took quite sometime to adjust to a point where my sugars were stable and normal most of the time and I had to increase the number of shots to do it although my daily amount of insulin dropped by 20 units which was quite significant.

    I've learned to eat much less and to fast with much more frequency and this has had a significant positive impact on my life. The interesting thing - my weight has remained constant for the last 15 years and it's right where I want it to be so it's not like I'm starving myself. That profile shot of me was taken last weekend and as you can see I'm not fat and I'm not skinny. :) It can be incredibly frustrating when ones control goes from good to bad because circumstances dictate you have to use different insulin therapies. I'm convinced most non diabetics including health professionals have no comprehension of what I'm saying.

    Anyway, I just take 1 shot of Lantus in the evenings before I go to bed, my sister who is also Type 1 splits her Lantus in half - one shot in the morning and one in the evening, she likes that approach better while I'm satisfied with one shot per night - whatever works eh!

    When I fast I completely skip shots as I don;t need them so there have been days where I have gone from 4 or 5 shots a day to 2 shots a day because of fasting.

    So don't give up hope, you may want to re-evaluate your dietary needs and potentially take less insulin with better BG control by simply taking a different approach on what and how you eat.

    All the best!
     
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  10. noblehead

    noblehead Type 1 · Guru
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    Have a look at the following, it's an on-line carb counting which should help matters:

    https://www.bertieonline.org.uk/

    On a basal/bolus insulin regime the first rule is to get the basal dose right, if you purchase the book Think Like a Pancreas it will teach you to do all this and will help you get your insulin-to-carb ratio's right (as the Bertie 0n-line course will), but do keep persevering with the diabetes clinic and tell them that your not happy with your treatment and back-up support. Good luck.
     
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  11. Mbaker

    Mbaker Type 2 (in remission!) · Well-Known Member

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    Hi @Fearless36, sounds like you are in an unlucky situation with both your GP and Hospital, the post code lottery.

    If I were in your shoes I would make an urgent appointment with your Doctor, warn the reception that you expect the Doctor to phone the hospital whilst you are there to arrange for an urgent appointment at the hospital. At the same time insist that your Doctor arranges either a DAFNE course. You could also try phoning 101 who have the power to book appointments. I hope this is resolved quickly for you.
     
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    #11 Mbaker, Jul 20, 2017 at 4:06 PM
    Last edited: Jul 20, 2017
  12. JMK1954

    JMK1954 Type 1 · Well-Known Member

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    Fearless 36, I used to be on two injections a day until some point in the late 1980s. At that point, a doctor at the hospital clinic told me he was changing my insulin to the basal/ bolus system. At the time my hba1c was just fine, my levels stable etc. With having to take insulin in the evening, I then found myself hypo every night, so my morning sugar levels rose dramatically. Yet this was supposed to be an improvement.

    Keep on fighting. Counting carbs can't do any harm, but I don't believe anyone should be forced into different insulins - and the consequent extra injections - against their will. I tried going back to twice daily injections a few years ago, but as I can only use animal insulin, what is now available for twice a day injections no longer suits me. I was diagnosed in 1964 and still sometimes struggle with the number of injections we are all expected to do these days. If you point out to your doctors that you were previously well-controlled on two injections and request a change back, there is no logical reason for them not to agree. Statements that the basal / bolus system is best are based on statistics, not on individual personal experience. The 'typical' patient with diabetes doesn't exist. We are all different. Hope you succeed in getting what you want.
     
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  13. Daibell

    Daibell LADA · Master

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    Hi. My last post was terminated before I finished it but I was going to say that if you want twice-a-day insulin then do insist on it. It has not been discontinued but Basal/Bolus is the new standard from NICE for T1 treatment giving the most accurate control. Your very high NovoRapid shots imply you may have quite a bit of insulin resistance thru excess weight? This will make control with any insulin regime difficult. If you are not already low-carbing then this is essential to control weight with insulin - you may have been told you can eat what you like when on insulin but you can't. The Lantus can be taken in the morning or evening or split twice day; you have been given poor and conflicting advice from the medics on this. When you do manage to see someone at the clinic you need to take a firm line with them and insist on going back to twice-a-day mixed insulin as this is what works for you.
     
  14. Fearless36

    Fearless36 · Well-Known Member

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    Sure, I was advise to literally use the size of my hand to determine portion sizes with protein, carbs etc. In the old days they used to teach using a plate, divided into sections, protein, carbs, vegetables (x2). The ideal portion size was a handful - so if you were eating say lentils, its a handful of lentils, if you eating almonds - its a handsize full of almonds.
     
  15. Fearless36

    Fearless36 · Well-Known Member

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    Thank you - what is DAFNE and who is 101? That is at least an option I am definitely going to consider!
     
  16. Fearless36

    Fearless36 · Well-Known Member

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    Thank you - that's good to know. I'm not actually overweight, nor do I eat excessively but I am very active and always doing a lot of exercise so that plays a large part too.
     
  17. Fearless36

    Fearless36 · Well-Known Member

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    Thanks, I saw that book mentioned earlier and already have placed an order on amazon. I'm looking forward to reading it!
     
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  18. azure

    azure Type 1 · Expert

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    Thank you for the reply. I'd never heard that before. I used twice daily injections more than 20 years ago, but was taught to count carbs and given a list of common foods and their carb amounts to ensure I had the right amount of carbs per meal.

    Back to your insulin regime though. It's you who has to live with the diabetes. If you don't like basal/bolus and its messed up your control, then push to switch back. It's what works for you, not what is most modern or new.
     
  19. Fearless36

    Fearless36 · Well-Known Member

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    Yep, it was much easy then. I know a few of the nutritionists that I've seen still use that approach of portion sizes using the hands but its not very scientific at all - and probably just for the lay person. I know for me, certain foods that were supposedly safe seemed to up my sugars, and other foods that were supposedly high for sugars like bananas did nothing at all. We're all different at the end of the day and I suppose its a comfort in some ways but I am definitely going to push and fight to get back to injecting twice a day - it made my life easier.
     
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  20. Fearless36

    Fearless36 · Well-Known Member

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    Thanks very much for sharing this information. It gives me a great deal of hope that I can and will get back to the good control I had. May be I need to do a little fighting but at least I know others have done it which gives me hope!
     
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