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Strategy for getting R insulin (UK NHS)

Discussion in 'Type 1 Diabetes' started by deszcznocity, Jul 7, 2020.

  1. deszcznocity

    deszcznocity Type 1 · Active Member

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    Hello everyone, I am following Dr Bernstein's protocol in the sense I use Tresiba and eat low/no carb for 9 months now. At my diagnosis in Sept 2019 my A1c was 92, after 4 months thanks to Dr B approach was down to 42, last month's A1c was 34. My problem is my consultant is hesitant to prescribe me Actrapid or Humulin S. I have achieved big drop even though I do not have R insulin and using Humalog, but it is very inconvenient to inject 1 or 2 units insulin multiple times a day, not mentioning inconsistency of the pen because of the small doses. I feel like I am hitting a brick wall. Latest discussion was that the consultant was worried on me having too many hypos. I was lost for words. They are worried about me going hypo but not worried me getting complications from too high bg levels? This is just pure nonsense. Can anyone share their experiences and strategies to deal with NHS consultants to get regular insulin?
     
  2. Rokaab

    Rokaab Type 1 · Well-Known Member

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    Probably because hypos are more dangerous - whilst high levels do damage over the longer term, hypos can kill - do you use the libre or other CGM, if so you could prove that you're not hypo'ing.
    To be honest with an HbA1c of 34 you are no where near high, and if the insulin you want is more expensive they'll see no point spending more money on it as your HbA1c does not really need lowering. If its the same/cheaper price you may have more luck though.
     
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  3. deszcznocity

    deszcznocity Type 1 · Active Member

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    Yes, I am wearing Libre. They told me they have never seen T1D so well controlled, ever. So if I am so well controlled, what is there to fear? Over the course of last 9 months I had maybe 7 hypos. I clearly know what I am doing. Ultimately it is my responsibility to take care of myself, is it not? It has been clinically proven in numerous trials that only HbA1c of <=30 guarantees no CAD, CVD, nephropathy, neuropathy etc. I feel that with such a low HbA1c I am having some issues with my eyes and neuropathic incidents (pins and needles). As for the money - because I am low carb I am acutally saving NHS shedloads of money. Also, if you develop complications, treating them would cost way more, then preventing them in the first place. I have checked the R insulin and they are all roughly in the same price range.
     
  4. ert

    ert Type 1 · Well-Known Member

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    Hypos are dangerous. Below 3.5 you are starving your brain of blood sugar, which causes damage.

    I demonstrate with data from a FCM (or CGM as I have an MM), that my time in target is excellent, so my consultants aren't concerned.
    I follow Dr Bernstein but I'm very happy with Fiasp (which he doesn't recommend). I'm on MDI but only dosing Fiasp for my meals (1-2 a day), waking and bedtime background is Levemir. I don't need any corrections.
    In consultation with your diabetes nurse, you may want to check your background insulin correct. They may recommend meal skipping (or carb skipping) to check.
     
    #4 ert, Jul 7, 2020 at 10:48 AM
    Last edited: Jul 7, 2020
  5. porl69

    porl69 Type 1 · Well-Known Member

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    Whatever you are doing is working well for you, so why change? An A1C of 34 is pretty amazing to be fair. Using the the likes of NovoRapid will still mean you have to do multiple injections daily depending on your BG levels
     
  6. deszcznocity

    deszcznocity Type 1 · Active Member

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    Well, I mainly eat lamb and beef which means I get a rather flat blood glucose increase after meals. The problem is Humalog is too fast and too short acting. It kicks in 30 min after injection and lasts approx 60 mins. I need regular insulin to cover me for 4-5 hours of slow glucose release (gluconeogenesis). What I do at the moment is I take 1 unit 30 mins before meal, another 1-2 units with meal and then another 1 or 2 units after meal (depending on the amount and type of food). This means 3 injections per every meal at least (because of pen injections inconsistency - too small doses for what it has been designed for - high carb content meals) I eat three times a day.
    I know hypos can be dangerous, but a) I check my blood glucose at least 18 times a day (according to my cgm) b) I know how to treat them.
     
  7. deszcznocity

    deszcznocity Type 1 · Active Member

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    Because it is an ****** pain to manage my lifestyle this way. We are talking about at least 9 injections to cover meals. Instead, I would just do 1 injection per meal.

    Edited by Mod
     
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    #7 deszcznocity, Jul 7, 2020 at 2:56 PM
    Last edited by a moderator: Jul 8, 2020
  8. Daibell

    Daibell LADA · Master

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    HI. To be honest I don't quite understand why you are doing what you are doing? Your HBa1C is amazing yet you sometimes inject multiple times for some meals - why? Few others would do this. It may give super control as your HBa1C shows but you worry about doing it. I would back off a bit. Let the HBA1C go up a bit (mine is 55 and could be better) and inject less often. All T1s are supposed to be on Basal/Bolus per NICE yet you appear to be on mixed Humalog? I would get the GP/DN to move you to Basal/Bolus unless you prefer the mixed. Have I missed something?
     
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  9. Rokaab

    Rokaab Type 1 · Well-Known Member

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    I believe at least one of the Humalog variants is the fast acting one, is that not the one that deszcznocity
    is using given he is using Tresiba as well (I know an ex-workmate of mine (who lives about a 5 min walk form me) also uses Humalog as a fast-acting)
     
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  10. deszcznocity

    deszcznocity Type 1 · Active Member

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    I am on Tresiba (basal) and Humalog (for meals). I follow Dr Bernstein's protocol to an extent because I haven't got access to regular insulin. I have done basal testing and know exactly how much Tresiba makes my bg line flat when fasting. I cover meals with Humalog the way I do because I am trying to mimc the R insulin effect.
    [​IMG]
    As per this article - here is why I strive for A1c below 5%:
    [​IMG]
     
  11. michita

    michita Type 1 · Well-Known Member

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    Hello there! This topic comes up from time to time. I’ve been low carbing for 4 years and maintain normal hba1c with minimum hypos. When I read dr B’s book I too initially wanted to get hold of R insulin but now I feel novorapid works fine for me. I like the fact it only stays in my body for a few hours. I think your constant should let you try R insulin though. I must say I find diabetes HCPs in general a bit too controlling in their approach (my biased opinion). Some of us really want to be in charge of this and decide ourselves how to manage rather than being told. and that’s a good thing and HCPs should be supporting us with our decision. So I share your frustration :-D
     
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  12. MarkMunday

    MarkMunday Type 1 · Well-Known Member

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    Explain your reasons to your doctor. I use Lantus, regular and Novorapid. I need all three to get the control I want. After explaining the requirement, the endocrinologist and prescribing nurse here in New Zealand were happy to give me what I need. Regular (Actrapid) is cheaper than the faster analogue insulins and should be easy to get.

    [​IMG]
     
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    #12 MarkMunday, Jul 7, 2020 at 8:44 PM
    Last edited: Jul 7, 2020
  13. deszcznocity

    deszcznocity Type 1 · Active Member

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    I disagree. One thing that perspires from dr B’s book is the message - know/learn your body. The other message is - the less variables, the more predictability. My bg levels rise differently depending on the type of meat I eat and depending on the fat intake. I know how much and what veggies I can eat and by how much will my post prandial glucose rise. I cannot eat fruits other than an occasional one strawberry (with a lot of whipped cream and dark chocolate sprinkled on top). I have tried and I have learnt. I know how to adjust Tresiba dosage in the morning when I know I will have stress at work. I know that I cannot take Tresiba for bedtime because as soon as my head hits the pillow my liver stops producing glucagon and my bg plummets only to reach the normal blood glucose as if I did not have diabetes at all. I use only about 30 recipes - this keeps me away from being bored of the same food over and over again, but gives all the assurance and predictability. I eat to have energy, not to eat away my stress or my problems. Anyway, I feel lucky I am not a woman, because it is a different ball game for them having to additionally deal with menstrual cycle hormonal changes every month. I try to do the best out of what I can. Life is unpredictable, sure. But again, this disease is managable with 5e right tools and the right approach. But when an obese dietician tries to lecture me on essential amount of carbs or when I speak to a nurse and she offers fiasp when I ask for regular insulin or when my consultant is worried about me getting a hypo and not by me getting complications, then I just feel really frustrated. Sorry, rant over.
     
  14. ert

    ert Type 1 · Well-Known Member

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    I'm afraid, you've missed my point. It was that you don't need to change your insulin to be able to cut back on your insulin injections. I have no idea what you are trying to say above, but it looks like you're not after a solution to what you're currently using, which would be the easiest way forward.
     
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    #14 ert, Jul 7, 2020 at 9:45 PM
    Last edited: Jul 7, 2020
  15. deszcznocity

    deszcznocity Type 1 · Active Member

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    Sorry, I might have missed it. I can cut back on my injections, it will just mean I either have more hypos (too large&fast single dosage for covering my meal) or I run higher bg than I want to (too small&fast dosage to cover my meal). The glycemic response of my body to the meals I eat has a steady/flat rise over 4-5 hours. The Humalog curve is short and steep.
     
  16. ert

    ert Type 1 · Well-Known Member

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    My Fiasp has a very steep fixed curve, yet like loads of other type 1's, I eat keto, with one injection and I don't hypo. It's not an insurmountable problem.
     
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    #16 ert, Jul 7, 2020 at 10:24 PM
    Last edited: Jul 8, 2020
  17. MarkMunday

    MarkMunday Type 1 · Well-Known Member

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    Regular (Actrapid, Novolin R or Humalin R) has always been more suitable when fat is the main source of energy. Doctors don't like it because the longer action profile causes hypos when used with high carb meals. You just have to explain that you don't eat high carb meals. If you explain your needs to your doctor you will get the insulin you need.
     
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  18. deszcznocity

    deszcznocity Type 1 · Active Member

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    Yes, it is not insurmountable problem. My last HbA1c was 34 = 5.3%. As per HbA1c Units Converter - this relates to an avg bg level of 5.8mmol/L. I know that for a lot of people this is amazing/acceptable for a T1D. My aim, however, is HbA1c of 5% or lower. In order to achieve that aim I need the right tools. I always assumed all people dealing with diabetes (including the medical profession) have all seen these charts: (but I guess this is not common knowledge after all)
    [​IMG]
    [​IMG]
    Anyway, I think Mark Munday gave me the answer - I just need to be persistent and explain to my consultant what my aim is and how it can be achieved.
     
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  19. ert

    ert Type 1 · Well-Known Member

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    Mark Munday is in NZ and not in the UK, so it isn't a given. The NHS, as it's free, has more of a gatekeeping system.
    5.3% - these are normal blood sugars. Even Bernstein supports that he hasn't seen complications in his patients at 5.3%.
    It's like you believe changing insulin will mean your insulin will work like a normal person's insulin. There's still variability in every injected insulin system. The insulin will still have a fixed curve plus there will be the same other variables, like insulin age, IR, injection sites, temperature, exercise, stress, meat fat content etc, etc, You will still have no homeostasis, like a normal person at 3.9 mmol/L and below 3.5 damages your brain, so for a GP, I imagine, the risks of even lower BS than what you have will outweigh any benefits.
    What is important is that you can see and understand the other side of the argument before you see your GP.

    PS. There's a mistake in the unreferenced graph you sent through. The Rapid insulin curve ends at 5 hours not 9. There no units on the y-axis. It's better to take something correct along to your GP like: https://www.diabetes.org.uk/resources-s3/2017-10/University%20Hospitals%20of%20Leicester%20-%20Insulin%20Profiles.pdf?
     
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    #19 ert, Jul 8, 2020 at 12:53 PM
    Last edited: Jul 8, 2020
  20. deszcznocity

    deszcznocity Type 1 · Active Member

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    Thank you for your comments, much appreciated. Can you point me to the source claiming brain damage starts below 3.5 mmol/L? I am yet to find any conclusive evidence regarding this bg level. Everywhere I looked - I see 2.78 mmol/L being the limit.
     
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