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Inconsistent blood sugars

Discussion in 'Type 1 Diabetes' started by Autumn1987, Mar 26, 2021.

  1. Autumn1987

    Autumn1987 · Member

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    Hello. First post although I have watched this place for a while. I have been type 1 for about 34 years. The last 15-20 years have been on lantus and novorapid. For the last 10-12 years I have been under the supervision of the GP surgery and before that the diabetic clinic. During that time I have consistently been “told” that overall control was good. My target level was set at 58 and Hba1c levels have hovered at around this level or slightly above. Day to day blood sugar levels have been quite volatile and I have always done a lot of testing. I am relatively fit and up until the last 3 months did a lot of running.

    Shortly before Christmas I had quite a bad hypo and was taken to A&E but not admitted. Unfortunately the follow up meeting with the nurse at the GP surgery was extremely unhelpful. Everything was blamed on me, saying that I was not adjusting for exercise, despite having been doing this for years. Even more worryingly, she said that I was mismanaging the diabetes as the HBA1C shouldn’t be below 68 or 58. At this time HBA1C was 47.

    Since then I have been looking at things intensively to try and identify the cause of the blood sugar instability. Although there is a basic pattern, there is a lot of variability within that and this means there are unexplained highs and occasional lows.

    In terms of broad trends there is a fairly strong dawn phenomenon during the mid morning. Although there are occasional night lows (which wake me) from testing these are not consistent enough to explain the highs in the morning. I also find that blood sugars usually spike around 2 hours either side of the daily lantus injection (6pm). This is not always consistent however (tonight for example it went to 16 by 8pm, but equally on other nights it has gone low within the couple of hours following the lantus). Notably there does also seem to be a drop in blood sugars around 2am although this isn’t often severe enough to go hypo. Overall the trend is that if night time blood sugars are ok, it will run high during the day. The blood sugars seem to spike violently in the couple of hours after meals despite bolus dosing for carbohydrates.

    During the last 3 months I have eliminated exercise as a possible cause (wasn’t convinced this was the case anyway, that was just the nurse). Have also extensively rotated injection sites to try and eliminate absorption issues, and have changed to new cartridges of insulin. None of these have had any effect. Carbohydrate remains broadly the same (3 main meals plus a smaller supper).

    Having read around, there seem to be a number of possible theories for what is causing this instability.

    One thing I noted from testing was that during cold weather, if I went from a room environment to a cold outside environment, the blood sugar level would crash in the space of about an hour.

    Another theory was that the lantus does not absorb consistently. It doesn’t seem to last 24 hours and also seems to have a peak at around 6-8 hours after injection. Having tried splitting the dose a couple of years ago, this didn’t seem to solve the problem, but instead introduced instability else where during the day. Have also experienced what “may” be “lantus lows” where it drops extremely quickly after injection. Would be interested to hear from lantus to a different basal insulin and whether that has worked? Reports on others like Levemir seem to be a bit inconsistent.

    Another question was whether it might be undiagnosed Addison’s disease. Would be interested to hear from anyone who has this. Have read that it can cause unexpected lows, but was wondering if it can cause unexplained high blood sugars also?

    There is also the possibility of stress, although stressful events don’t seem to correlate to changes in blood sugar.

    Have wondered if reactive hypoglycaemia could be an issue, but can’t find terribly much on this.

    Was just wondering if anyone had any information about the above or indeed anything else that might be relevant? I have another follow up with the GP surgery in a couple of weeks and think it may be necessary to demand referral to the specialist diabetic clinic as I don’t think they really have a good knowledge of diabetes/ endocrine issues. Thank you.
     
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    #1 Autumn1987, Mar 26, 2021 at 10:32 PM
    Last edited: Mar 26, 2021
  2. EllieM

    EllieM Type 1 · Moderator
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    Welcome to the forums.

    I would definitely push for a referral to a specialist. I've been T1 for 51 years (first 30 in UK) and I've never had a GP manage my T1. They are all pretty useless, in my experience, and most have been happy for me to get my blood glucose management treatment from a hospital specialist.

    And I am boggling at the advice that your hba1c should not be below 58, given that the NHS recommendation is that T1s should aim for 48.... Having said that, I personally have lost hypo awareness with an hba1c of 47, so in the past I've needed to keep it around 50. I now self fund a dexcom, which gives me the confidence to aim for the 48, because it has a warning signal once I go down to 4.4. (That's the default level, but it is a great help with hypos, and allows me to get through the night without having to worry about them.) It also helps me to manage my blood sugars during the day and avoid some high readings.

    I've had a couple of lantus lows, and also find that sometimes I just need a lot more insulin, which is sometimes but not always helped by changing my lantus cartridge. (Sometimes it just doesn't seem to work that well after 2 weeks of use.) I would love to try a different basal, but unfortunately although New Zealand would give me a pump, they only have lantus available as a 24 hour insulin. (Winge, winge. :)). Personally I'd want to try out levemir/detemir if I had the option. In short, I share your lantus frustration.

    Do you have access to a continuous glucose monitor? If you get a specialist referral you may find that you qualify for a NHS one and I find that it makes a big difference to my diabetic control, and in particular to my time in range, and also to my ability to both avoid and not be stressed out about hypos.

    I'll stop before this turns into too much of a wall of text. Good luck.
     
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  3. Juicyj

    Juicyj Type 1 · Expert
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    Hello and welcome to the forum.

    I am shocked... not at you, but your GP, their use of language is appalling.

    Please get referred to a specialist team, they are trained not to use this type of blame language when managing patients with diabetes. You had, in all your 34 years one hypo incident requiring medical assistance - the last thing you needed to hear is someone blaming you for mis managing your diabetes. How about they take your condition and try and manage it as well as you.

    Your HbA1c is fine, as long as your hypo awareness is retained there should not be an issue. It is a gauge for the NHS to track you on. Time in range is the best way to really focus on control to see what’s going on, getting a referral will mean your team can help you monitor this.

    In regards to instability try and look for patterns so ideally eating same foods for a few days running and see if you can spot trends, once you get referred you may well get the opportunity to try tresiba instead which is a longer lasting basal and more stable than lantus in its profile, I found this basal much better to manage vs lantus.

    Please also get back to running, it’s a great mood booster and it helps improve control too, please remember that you should not be blamed or told you are mis managing, your team should fully support you and pointing fingers will never achieve results.

    Best wishes and let us know how you get on ?
     
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  4. searley

    searley Type 1 · Moderator
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    Why don’t you go for a pump? That way you don’t need long acting insulin and have more control?
     
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  5. becca59

    becca59 Type 1 · Well-Known Member

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    I reiterate advice from above to get referred to a specialist. It is in the guidelines for type 1 anyway. It is possibly time to change that Lantus to a more modern insulin. Plus you could be eligible for a Libre. All those things would come via a consultant.
    Ignore the comment re HBA1C it just shows how unknowledgeable that nurse is. It is excellent, so you are obviously doing many things right.
     
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  6. Autumn1987

    Autumn1987 · Member

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    Thanks all. Prior to the start of Coronavirus I was in the process of applying for a libre but it was put on hold when the first lockdown came in. I’d change GP but because this is currently in place as an outpatient referral, the concern is that things could get lost going to the wrong surgery. The other concern of course is whether another GP would actually be any better.
     
  7. becca59

    becca59 Type 1 · Well-Known Member

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    You can stay at the same GP but please ask them to refer you to a consultant at the hospital. They cannot refuse this and you should be doing this anyway.
     
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  8. chrisbug

    chrisbug Type 1 · Well-Known Member

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    Hi,
    I've been type 1 for 22 years and I had a bad hypo start of October. Immediately went to my gp who referred me to the hospital, by mid November I was using a libre.
    Similarly to you, a libre was mentioned before lockdown, i was under the care of gp for about 15 years(?). Now I'm back under the care of the hospital.
    I've been really lucky, and I can't fault my GP or the NHS in such trying times.
    All the best, I hope things happen soon for you.
     
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