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Insulin

Discussion in 'Type 1.5/LADA Diabetes' started by Carl W, Feb 17, 2020.

  1. Carl W

    Carl W · Active Member

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    Hi guys, was diagnosed with Type 1.5 last may, would any of you know why I’m not already on insulin? Doctor prescribed me gliclazide as my pancreas is still producing around 10% insulin, but other people I’ve spoken to on here have said they were on insulin near enough first day of being diagnosed..... TIA
     
  2. JMoli

    JMoli LADA · Well-Known Member

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    Hi, I was put on gliclazide whilst awaiting tests to confirm type 1 diagnosis but I’m struggling with rapid weight loss so am starting insulin this week. I’m afraid I can’t really help re your question as I’m such a newbie but I’m sure someone else can help :)
     
  3. Carl W

    Carl W · Active Member

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    Hi, I had rapid weight loss at the start. I had lost 2 stone in 2 weeks I think it was, but it was apparently the muscle that had been “eaten” away, plus have lost more weight since going back for checkups, they say it’s LADA or 1.5 something like that, I’m on a statin tablet and gliclazide, was only wondering why I hadn’t been put on insulin as of yet, seems to me the only way to keep the sugars down at the moment is to eat less, but I eat less I’ll lose more weight. Eat too much, still lose more weight ‍♂️ seems like they’re not sure what I have if I’m honest. But thanks for replying.
    How new to this are you? It’s only been about 9-10 months or so for myself
     
  4. therower

    therower Type 1 · Well-Known Member

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    @Carl W . I can’t answer your question but the longer you can go without NEEDING to go on insulin the better.
    It seems from what you have posted that you definitely needed reassessing and should be having more tests.
    You mention that your doctor has diagnosed you. Doctors are not diabetes specialists especially when it comes to type 1.5 or LADA. I would suggest that you attempt to see a diabetic specialist/ endocrinologist in order to get the appropriate advice and treatment.
     
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  5. JMoli

    JMoli LADA · Well-Known Member

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    The weight loss is scary isn’t it. I was so slim anyway and have been eating such a high calorie diet with lots of healthy fats and still keep losing weight. I was diagnosed early January and put on gliclazide until blood tests were done. This took over three weeks, my dr went on holiday and then I had to cancel starting last week due to the school holidays/childcare issues. I was terrified of insulin until recently but I’m desperate to start now to try and get weight back on - hoping it goes on soon!! Im on the maximum dose of gliclazide and my blood sugar levels are fairly normalish just now and I feel good - just horribly skinny!
    Maybe you should ask the drs/nurses, are they not concerned about your weight loss?
     
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  6. Carl W

    Carl W · Active Member

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    I’ve seen a specialist already, last year, around may sometime I think, said I’ve had it since feb of last year, but diagnosis wasn’t until April/may sometime, They just keep putting it off... it’s frustrating, if I eat too much the sugars go high, if I don’t eat too much to keep them low, then I’m basically starving myself... at the mo, I can’t win
     
  7. Carl W

    Carl W · Active Member

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    I don’t think they’re that concerned at the mo, it’s been a year almost, and the weight I’ve lost they say was muscle.... I use to be at the gym 5 days a week so it’s not really weight as in weight, just muscle mass, still my clothes don’t fit properly anymore, they can see I’ve lost a bit more weight but still choose to not put me on insulin, last visit to the diabetic nurse they were supposed to of contacted me the week after but failed too... but I have another appointment at end of month so shall see what they have to say then.. ‍♂️
    What meals are you eating that are high calorie and healthy fats, if you don’t mind me asking?
     
  8. Mad76

    Mad76 Type 1 · Well-Known Member

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    Sorry no idea why you arent on insulin.
    I was diagnosed in april last year
    And put straight on insulin.
     
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  9. therower

    therower Type 1 · Well-Known Member

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    @Carl W . This must be totally frustrating.
    Only a suggestion but could you consider changing your diet for the foreseeable future?
    Fortunately I can manage a carbohydrate diet as I’m on insulin. Maybe an option for you could be a LCHF approach to eating if you haven’t already.
    There’s a comprehensive sub forum that involves LCHF. I won’t begin to explain how it may benefit you with keeping weight on, having energy and keeping BS levels at an acceptable level.
    Apologies if this is something you are already aware of. Just maybe something to consider though.
     
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  10. EllieM

    EllieM Type 1 · Moderator
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    Maybe you should eat a "normal" diet (ie not desperately low carb) fpr a few days before the clinic visit to push your sugar levels up and demonstrate that the gliclazide isn't coping with your insulin needs? Make sure that you remind the doctor that you are LADA not T2 and ask when you are going to start insulin?

    Also, have you been given equipment for testing for ketones? While you are not on insulin you are in danger of diabetic ketoacidosis if your insulin production suddenly falls. You should be prepared to go straight to hospital if your ketone levels go high.
     
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  11. Carl W

    Carl W · Active Member

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    Thank you, all information is appreciated
     
  12. Carl W

    Carl W · Active Member

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    Hi, I do eat “ normal” now and then, I’m not keeping my carbs down that much, I was told to keep eating carbs to a certain extent to maintain energy etc, and nope, the only thing I have is the contour for checking the blood glucose.
     
  13. JMoli

    JMoli LADA · Well-Known Member

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    Hi, I don’t think I’ve had any success with my diet tbh but eating lots of nuts and seeds (walnuts with humus and sour cream dips etc) full fat Greek yoghurt, chunks of cheese as snacks, salads with extra virgin olive oil, peanut butter, avocados, mozzarella and olives, cauliflower cheese made with cream, butter and cheeses (cheese, cheese and more cheese!) salmon, roast chicken with the skin, pesto chicken, etc
    I’m looking forward to having rice again, I carried on with bread and potatoes in the last few weeks but decided rice and pasta were forbidden (no idea why I decided that) Still super anxious about pasta (the horror!) but I think I’ll have to overcome the fear.
    Fingers crossed you get some good advice on what to do at your next appointment and whether insulin is needed soon or not.
     
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  14. KK123

    KK123 Type 1 · Well-Known Member

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    Hi @Carl W. When I was diagnosed (3 years ago) the tests showed that I was producing insulin ('the lower end of normal'), the antibody test (GAD) was positive so they said type 1. They did not seem to recognise LADA/1.5 and when I asked (because I was in my 50s) they said we class it all as type 1. I was sent home from hospital (was admitted with very high glucose levels & ketones) with insulin and used very small amounts. Over the next few months I had several hypo's and they said stop the insulin for a month to see what happens. What happened was that the only way I could keep the levels low was to eat very low carb. That's all very well but I found it restrictive and wondered why I had to swap what was a low to medium carb diet to one I didn't like. I discussed it with the Consultant and he said continue with your insulin then, the basal was around 6 units a day (a tiny amount) and then if I had a higher carb meal I could supplement it with bolus (again my meals were fairly low carb anyway but this gave me the freedom to be able to use insulin if I had a higher carb meal).

    The Consultant also said that using small amounts of insulin would actually give my remaining beta cells a rest and prolong my working pancreas as it were. He said keep an eye on levels because eventually they would rise but this could take months or several years.

    So, here I am now, still using small amounts of insulin so I assume I'm still producing some, still on a lowish carb diet but sometimes having a blow out for which I can use insulin, and using 1/2 units for some meals which helps me keep my levels low WITHOUT severely restricting my 'lifestyle'.

    I have found the Consultants are very receptive to YOUR wishes, ask them the question, tell them you are having to restrict your diet more than you want in order to maintain lower levels, maybe as others have said, eat a higher carb diet for a few days and test to see what your glucose levels do in response to that. There is no 'one way' approach but personally, I find having my insulin available to me is perfect. x
     
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  15. Carl W

    Carl W · Active Member

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    The situation you were in three years ago, sounds very much like my situation now, except for some reason, the diabetic clinic staff etc just don’t want to listen to me,‍♂️
    I’ve had the diabetic nurse say to me on my last two visits that she’ll speak to the consultant and get back to me the following week, both occasions there have been no follow up calls ‍♂️‍♂️
    But I do have an appointment at the end of this month, so fingers crossed, ha

    Thanks for help
     
  16. cz_dave

    cz_dave Type 1 · Well-Known Member

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    As a Type 1 or LADA, you should be put on insulin.
     
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  17. Carl W

    Carl W · Active Member

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    Well, I went to an appointment last week, with the diabetic nurse. And still I’m just taking the gliclazide.... I told them I’d like to be put on insulin, even if it was a small amount for the day.... but I guess they have different opinions to myself.....
     
  18. JMoli

    JMoli LADA · Well-Known Member

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    Hi Carl, are you getting normal readings just with the Gliclazide? I was looking at my wee book of readings and I just don’t think it worked for me much? I’ve just started a low dose basal insulin now and told to stay on gliclazide too but my numbers hadn’t changed much from when I took the minimum dose to when I took the maximum, in fact the morning readings were worse, so weird.
    Did they say why they didn’t want to start you on insulin?
     
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  19. JMoli

    JMoli LADA · Well-Known Member

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    (I mean the gliclazide, I’m only a couple of days into the insulin and it’s starting to take the blood sugar down)
     
  20. Carl W

    Carl W · Active Member

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    Hi, so I went to my appointment last week, had blood tests etc, trust it to be the day I hadn’t eaten anything ‍♂️, I mentioned about wanting to start insulin, the diabetic nurse said they’ll look at starting me on a dose for the morning readings, and since that appointment I’ve had no phone call, letter or anything, if I’m honest, I’m really not surprised I haven’t heard anything...and as to why they didn’t/ don’t want to start me on insulin, your guess is as good as mine
     
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