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Husband Prescribed Wrong Insulin, V Worried & Confused

Discussion in 'Type 1 Diabetes' started by AliceKeates, Jul 9, 2018.

  1. AliceKeates

    AliceKeates · Newbie

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    Hi all,
    Posting on behalf of my (not very forum-y) husband, who was recently diagnosed with T1 (about 6 weeks ago now). Things have been mostly going really well, but I'm really confused and freaked out about what's going on over the last few days. To cut a long (and annoying) story short, a miscommunication between the GP and the diabetes nurse at the hospital meant that when he ran out of his basal insulin (Levemir) he was erroneously given a prescription for more bolus (Novorapid). Not being especially medically minded, and also being still quite new to all this, he didn't immediately pick up on this and I think just assumed that since it was a new pen it was also a different insulin. In fact, it only dawned on him today (Monday) that he was taking Novorapid as both bolus and basal. He was supposed to start on the new batch of Levemir on Wednesday last week, so you can see this has been going on for a few days now. My understanding is that this is *dangerous*. To give you a sense of numbers, his basal/bolus doses ought to be as follows:

    7 units of Levemir am and pm
    2-5 units of Novorapid with meals (depending on carb and protein content -- we've moved straight to a moderately low carb diet to try to make this whole thing easier to manage)

    Prior to the mis-prescription, this was going well. His waking readings were a bit higher than I'd have liked (usually around 7-7.6), but the readings before/after meals were fine (all in the 4.2-6 range). To our knowledge, he's never had a hypo. When he saw his diabetes nurse she was really pleased with his progress and told him to keep it up, and to up his basal at night by maybe one unit if he wanted tighter control over the morning readings.
    Since the mis-prescription...not much has changed. The only difference has been that his morning readings have sometimes been a tiny bit higher (but never 8 or above). Now, my understanding is that this...can't be right?! Someone with sufficient insulin sensitivity for 5 units to cover a meal that included a large, carby wrap (we were out at an event and there wasn't a lot of food choice) should surely be in hypo territory after taking 7 units of Novorapid before bed with a blood glucose reading of 5.5 or 6, right? Does this mean he's likely to have been having asymptomatic hypos overnight before being rescued by dawn phenomenon? If so, does that mean he's always going to be hypo-unaware? And why haven't his day-time readings really changed? Or have I misunderstood the risks of taking Novorapid without food and actually this looks ok?

    Can any of you T1 ninjas help me to understand?

    Thank you!
     
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  2. Juicyj

    Juicyj Type 1 · Moderator
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    Hi and welcome @AliceKeates

    Firstly ring your DSN now and explain what's happened and see if you can collect an emergency levemir pen today. You can also go to Boots and get one from there as they can check your husbands records online and give you a pen, however you may be charged for it.

    What is really important is that he does not go low, he won't get hypo unawareness overnight, it takes a while for someone to lose this so don't worry about this, a sure way to know if he's hypo overnight is the fact he could wake up feeling hungover, if he's feeling fine then it's not been a problem, generally we do wake if we go low, we have vivid dreams and feel sweaty and disorientated. Novorapid should only be taken for food and correction doses when running high but without any background insulin on board he may of been ok, I use a pump which only uses novorapid as it steadily streams insulin into the body acting as a background insulin as well as for food and correction doses.

    There's a lot to learn when diagnosed so keeping a good stock of supplies is important, I would also recommend getting a copy of ' think like a pancreas' written by a type 1 and useful for getting your head round things.

    Hope you get this sorted out today, best wishes.
     
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  3. helensaramay

    helensaramay Type 1 · Well-Known Member

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    A few years ago my surgery started to make a habit of misprescribing my insulin. The seemed to ignore the boxes I ticked on the form and gave me something random from the list.
    After a strongly worded letter to the surgery manager, they changed their process to include a colleague review and there has been no mistake since.
    Until I had diabetes, I had no experience of repeat prescriptions (and very little experience of non-repeat prescriptions) but I understand most repeat prescriptions are set up for all medication to last the same length of time which is easy when you take the same amount every day. But insulin and needles and lancets and test strips are just not like that. It all depends ...

    I never used pre-filled pens. I always used pens which you add a cartridge.
    This meant, despite the prescription mess-ups, I always spotted a mistake as I made a check whenever I changed the cartridge.

    As a bit of a low waste zealot, I struggle to understand why pre-filled pens exist. In over 12 years, I never had a problem inserting a cartridge, spare cartridges take up much less space than spare pens and there is less waste.
    But I am clearly missing something because if that was the the full story, cartridges would be cheaper than pens and the NHS would be trying to save funds.

    Sorry, I don't mean to misdirect this thread.
     
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  4. AliceKeates

    AliceKeates · Newbie

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    Thanks for this advice, @Juicyj and @helensaramay!

    He's been in touch with the surgery and the nurse and should have his Levemir by this evening. The NHS has mostly been fantastic, but the series of errors that led to this happening has been really frustrating and worrying. He'd requested a new prescription well in advance, but when he turned up to get it the surgery told him that they had no record of the request and that no medication for his diabetes was on his record -- just the lancets and needles. He'd been told by his consultant that the hospital would write to the GP to make sure they had a list of the appropriate medication, so rather than asking for an emergency appointment with the doctor he called the hospital, who said they'd sort it out with the GP so he could be issued with the right prescription. Then he was told the prescription was ready, but it ended up being for Novorapid even though he had plenty of that and was only asking for Levemir. The new prescription was in cartridges with a big new pen, @helensaramay (and I completely agree with you -- the prefilled pens seem like a bizarre waste of resources -- so it looked different to the pre-filled Novorapid he already had, and he just assumed they were different because he hasn't got that familiar with the names yet. It's the sort of thing I'd probably have noticed, but I'm trying really hard not to be a micro-managing diabetes-police spouse so I've been staying away from all the medication! Argh.
    I'll invest in a copy of the book you suggest, @Juicyj -- sounds really helpful, thanks.
    He's been feeling completely fine -- no waking, no odd feelings, nothing. I guess we've just been very lucky and, as you say, the fact that there was no basal hanging around in there meant that he didn't crash too much.
    He's very calm about it all -- but my confidence in our understanding of how insulin etc works has taken a real knock, which is why I've come here to see if anyone can shed light on why his readings haven't really been any different.
     
  5. Juicyj

    Juicyj Type 1 · Moderator
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    Hi @AliceKeates As he's just started on insulin then he would of been started on low doses, when newly diagnosed type 1's get insulin the stressed pancreas becomes less stressed and can also produce more insulin in the honeymoon, over time his doses will increase as the pancreas stops production altogether, so this is the most plausible reason why he's coped so well without his background.

    I appreciate your confidence has been knocked however building your knowledge up will help you gain more confidence again, and in time it will get a lot easier as your experience grows too.
     
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  6. cxl0702

    cxl0702 Type 2 · Member

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    One thing I also did when I became type 1 November last year was kind of force a hypo just to see what it felt like dextrose at the ready. I am now aware of what a hypo is and don’t panic.
     
  7. Daibell

    Daibell Type 1.5 · Expert

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    It's always best to use online prescription ordering if you can and most surgeries should now be able to offer that. There is no manual intervention along the way so items can't be 'swapped'. I tick what I want every 3-4 weeks and for needles etc I may only tick the box every few months. There is also an entry for occasional items such as a new pen.
     
  8. Peterinkiel

    Peterinkiel Type 1 · Member

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    In reply to your intelligent post, I totally support your statement about pre-filled insulin pens.

    Changing the cartridge is no problem as they are all coloured coded. They clearly must be more economical than tham replacing a whole syringe.

    In the context of this theme, you should always check your prescriptions for accuracy in the description of insulin type.

    Best wishes to the lady who started this thread. It must be difficult to deal with a ooor support service.
     
  9. mibrahim987

    mibrahim987 Type 1 · Newbie

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    Hi,
    Many others here have already given sound advice regarding what to do, so I thought I'd focus on your question as to why your husband hasn't been going hypo.
    Basically at night your body enters a fasting state while your sleeping and your liver undergoes gluconeogenesis (produces glucose). If an insulin dependent diabetic was to not have any insulin active in the body overnight, their glucose would go high for this reason. Taking basal insulins helps counter this by providing an insulin supply overnight to keep glucose levels down.
    The novorapid only works a few hours so while it may initially drop the glucose levels, the remainder of the night your husban is insulin free and therefore the glucose levels will rise again.
    Also, the reason he hasn't been going really hyperglycaemic (high sugar levels) is because he may still be producing some insulin in his pancreas. This will eventually stop as he passes through his 'honeymoon' phase, which can take months to years in some cases.

    Hope that helps.
     
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  10. buckmr2

    buckmr2 Type 1 · Well-Known Member

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    Hi
    Ask your GP surgery if they have online ordering for repeat prescriptions, I think most do these days
    I use Patient Access to order my prescriptions (it's an App I use on Andoid).I just tick the items I want (insulins/inhalers/tablets/needles/etc) and add any comments.
    This way you have a record of what's been ordered and when.
    You can also access health records if your surgery offers this online and make nurse and GP appointments which they then email/text to you and automatically add it to your (Google) calender on your phone
    I think the poster above meant Fiasp insulin which is NovoRapid with some additives which make it work quicker.I changed from NovoRapid to Fiasp earlier in the year to get BG back to normal quicker if they were too high.
    Also ask your diabetic nurse /diabetologist if your husband can go on a Freestyle Libre trial.It's a sensor patch you put on your arm then you just scan it to get your "Blood sugars" with either your Android phone ,Freestyle Libre reader or certain smartwatches (I use a Sony 3? with old firmware so it can read the sensor) .The benefits of the Libre are it tells you what levels my BG has been for the previous 8 hours ,what they are currently and whether they are going up or down eg through the night ,it keeps a record of your carbs/insulin worse taken/BG trend and graphs etc etc. for up to 90 days.I upload the data online then my diabetic nurse can see what my sugars are doing and advise where necessary over the phone.I'm just about at the end of my 3 month trial so will see shortly if I get to keep it with Libre sensors on prescription as they cost £35ish every 14 days if self funded.
    Another handy feature is it tells me how much insulin I have working and how long it's going to continie to be working for.
    Good luck.
     
    #10 buckmr2, Jul 12, 2018 at 7:48 PM
    Last edited: Jul 12, 2018
  11. Diakat

    Diakat Type 1 · Moderator
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    Hi @cxl0702 - slightly confused, are you T1 as your profile says T2? Or T2 with insulin?
     
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  12. Dannymum

    Dannymum · Member

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    Hi there Alice,
    Having had 8+ years experience of T1D, that situation should normally cause a problem as he will not be covered by the 20+ hours of the Levemir.
    Since he is recently diagnosed, maybe he is in the 'honeymoon' phase and still producing some of his own insulin ?
    That is the only explanation I can think of, being well read on T1D for my son.
    He needs to get back on the Levemir, insist they get it right, my doctor / chemist is always getting scrips wrong.
    Good Luck. DM
     
  13. QPR4Me

    QPR4Me Type 2 · Active Member

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    Hi Alice,

    This is interesting stuff. I'm a T2, diagnosed when I was 28 and never overweight. 30 years of mismanagement (related to old style Diabetes Clinic teaching, which hated Low-Carb and Keto diets, along with my own Depression, hatred of needles and losing the will to live) led me to blow up to 110 Kg. Now, I weigh 77 Kg and am on a quarter of my total Insulin intake compared to 13 months ago. Your husband is on lower doses than I ended up on, long before I went low-carb (ish). That said, I would worry about night-time (sleep) hypos occurring. My wife found these to be particularly distressing to deal with, while I was away with the fairies as, back then, I often wouldn't wake but she did when she realised the the quivering mess beside her had broken out in a cold sweat and was making very good impressions of the Turin Shroud!
    Your GP Practice needs to explain how this mess-up occurred as this could be seen as negligence.
    However, as, seemingly, no real harm has been done, it suggests, to my tiny little mind at least, that your husband has a chance of managing his Diabetes really well on an exercise and low-carb diet regime, with regular checking of his blood sugar levels.
    Good luck to both of you.
     
  14. EmChan

    EmChan Type 1 · Newbie

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    Hi, my initial thought is that your husband is still in honeymoon. However, my personal experience (T1 for 15 years) is that I was having hypo-unawareness through the night, which I only discovered after using the libre. My levels would drop below 3.5 for a few hours and then rise up again, so I never knew any different in the morning despite being in quite a dangerous position in the night. Prior to discovering this I had been managing on the same treatment plan for around 10 years, with no overnight testing and consistently good HBA1C results... So have no indication of how long this had been a problem and no way to tell that anything was wrong. Its great that your husband has his levemir now, but if you guys ever find yourselves in that situation again would recommend getting hold of basal any way you can and not risking taking bolus instead because you think it worked in the past.
     
  15. bgst

    bgst Type 1 · Member

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    Lots of good advice above.

    In theory I agree that pre-filled pens are not as environmentally friendly as cartridges, but pre-filled pens can be more easily left around as a back up than cartridges (for in the event you leave your pen somewhere, eg at home). You just need to make sure that you rotate and use the pens appropriately so they do not expire, but I am definitely a fan of pre-filled pens for this reason.
     
  16. nytowl

    nytowl Type 1 · Newbie

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  17. nytowl

    nytowl Type 1 · Newbie

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    4o years ago when I first started taking insulin for Type 1 control The Doctor said it would be wise to try a slight insulin overdose so that I could experience the feelings you get, at that time I was in a safe place to try this ie. Hospital. The feelings are different for everyone but my feeling for the first time Hypo was quite strange a feeling of being very anxious and Hyper, then a white out with vision, severe sweating and I think finally incoherent speech. It is quite frightening when this happens say walking to work and not getting there, Then to find yourself waking up in Hospital. Well this is how it went for me until I was stabilised and it took a very long time to sort out my personal life too. Also lost my Job because of regular hypos, so it was a steep learning curve for me. What I went through is not a normal response but it is unusual. The insulin since is more refined accurate & not animal insulin.
     
  18. BridgetLamb

    BridgetLamb Type 1 · Member

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    Hi
     
  19. BridgetLamb

    BridgetLamb Type 1 · Member

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    Hi I got the freestyle Libre system 10 days ago . Just Amazing I have being trying to get it for about six months . Hope I can continue to get it .could not get reader . I had to get I phone 7 . Again Amazing hope NHS will be available soon . Think most Dr Nurces have to give more help . Thanks All
     
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