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I am really Struggling and Need Help

Discussion in 'Diabetes Discussions' started by Kimberleyart1, May 21, 2019.

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  1. Kimberleyart1

    Kimberleyart1 · Member

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    Hello!
    I am a 24 year old Mother who has had type 1 for 5 years now and I have had on and off bad control, when I was pregnant I became completely insulin resistant and my body just doesn’t seem to have gone back to how it was, I have really poor control at the moment and seem to be averaging a BM of 20 most days and Keytones at 2. The hospital don’t seem to be interested unless I go in through A&E which I refuse to do. I’ve also asked multiple times for a pump. I’ve tried everything I can and just feel so alone! It has effected my relationships and my mental health and I really don’t know what to do now!

    Does anyone have any advise or help?

    It will be so appreciated!

    Thank you
     
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  2. Knikki

    Knikki Type 1 · Well-Known Member

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    Hello @Kimberleyart1 Welcome to the forum and sounds like your having a bit of a rough ride.

    I don't have a pump so can't comment on them, but do carb count and adjust your insulin depending on what foods you eat?
    Can you get access to a Libre from your medical team or do you have a diabetic nurse you can contact?
    What insulin are you on?

    Also it would be useful if you could fill in your profile a little more, it then gives us an idea of which Type you are (I know you have mentioned it in your opening) it's just the a lot of diabetics on here are Type2 so tend to get different advice :)

    Going to tag a couple of people in that might also be able to give some advice @becca59 @MeiChanski , @Fairygodmother @Robinredbreast also @Mel dCP , @helensaramay as they have more knowledge on pumps :)

    I am sure I have left some off sorry people.
     
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    #2 Knikki, May 21, 2019 at 5:35 PM
    Last edited: May 21, 2019
  3. MeiChanski

    MeiChanski Type 1 · Well-Known Member

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    Thank you @Knikki

    Hello, welcome! Sorry you are feeling rubbish :( Could I ask have you spoken to your DSN or consultant about this? While ketones and high blood sugar is scary, an insulin pump is a tricky route. I am trying for one. There is a criteria that needs to be fulfilled - one of them is to complete a carb counting course. So what insulin are you using? Do you carb count? Have you done a carb counting course? When you were pregnant did your diabetes team offer any help that could bring you to discuss it again? Being a mum is tough, I’d urge you to get in contact with your diabetes team for the cooler gadgets, since it’s only your consultant can approve funding for things like CGMs and pumps and your GP to refer you for mental health help to improve your mood. Insulin resistance does happen to everyone, so I don’t know if you are going through the monthly hormones, or have something else going on that is causing your BG to be high. Any chances it has come down now?
     
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    #3 MeiChanski, May 21, 2019 at 5:51 PM
    Last edited: May 21, 2019
  4. Robinredbreast

    Robinredbreast Type 1 · Oracle

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    Thanks @Knikki for the tag :)

    I am not on a pump and like Knikki I carb count.

    I had a bit of a rough time last year and I was promised that I fitted the criteria for the Libre ( whilst in hospital). When I had my appointment a little later on, I was basically told no, I didn't fit the criteria ! :eek: I left the room disheartened, frustrated and I felt pushed aside. But things didn't get better, I phoned twice and told them how I felt and what it was doing to me, I really went to town ( which isn't something I would normally do).
    To get to the point, you have to make a loud enough noise to make them see that you really, really need help, you shouldn't have to kick up a fuss, but that seems to be the only way sometimes to get these medical personal to listen. They are there to help, advise and support you, from what you have written they are failing their jobs badly. It is clearly affecting you, both mentally and emotionally too, you need help and I hope you get it very soon, don't be pushed aside, your health matters !!
     
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  5. helensaramay

    helensaramay Type 1 · Expert

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    @Kimberleyart1 sorry to read about your problems.
    As @Knikki mentioned, I am a pumper. However, it is definitely not a silver bullet. In fact it was hard work at first - I felt I had to go back to diabetes school to relearn carb counting but much more accurately as well as working out the different basal rates at different times of the day for different exercises. Over the years, a pump has helped me gain more control but my motivation was the opposite of yours - too many hypos.
    I agree with @Robinredbreast that you need to get your diabetes team to help you out with a constant BG in the 20s. And with a BG that high, it is not surprising you feel so terrible.
    A few things which may help
    - when my BG gets high (for me, it is over 14), I become insulin resistant and need more insulin to correct than usual. And when my BG gets even higher, I need even more insulin to correct. For me, if my BGs is in the 20s I will need at least twice as much as my usual correction dose. But I want to emphasise this is for me and we are all different so take care not to hypo.
    - when my BG gets high, I change my normal diet for one with my less carbs. For example, I eat omlette and salad for dinner instead of pasta. If I feel I have to snack, I snack on cheese or nuts and I avoid sweet stuff until my BG has started to drop.
    - as I am getting my BG down I test and test and test. I try to avoid "rage bolusing" (correcting on top of correcting) despite temptation.
    - if I am stressed or ill, I will increase my basal insulin. When I was injecting I would increase it by 20% and see what happened for a few days. If I was still high, I would notch it up a little more. But doing extra testing and keeping my hypo treatment close at hand in preparation for a drop.

    Good luck.
     
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  6. Kimberleyart1

    Kimberleyart1 · Member

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    I do carb count and adjust but nothing seems to work, I do 7 pricks a day but apparently that isn’t enough to qualify for a libre.

    I am on fast acting Apidra and long acting Lantus

    I’ll work on my profile didn’t realise it hasn’t saved x
     
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  7. Kimberleyart1

    Kimberleyart1 · Member

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    I’ve tried to get appointments multiple times but they always get cancelled and I can’t seem to nail them down on the phone.

    I do carb count and it doesn’t seem to work no matter what I do. I’ve done DAFNE a few times!
     
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  8. MeiChanski

    MeiChanski Type 1 · Well-Known Member

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    Any possibilities your GP could push it for you? Or refer you to a different hospital? I know I had a choice of two hospitals in this area or email tham? My DSN is more difficult to get hold of so I leave voice mails for her but my consultant has a different number & he is much easier to get in touch with. So I’m wondering if you can’t get in touch with your DSN, maybe try your consultant? Or are they under the same number? and my GP wrote another letter to my consultant about my diabetes control. I am struggling too so you aren’t alone on this one. It is difficult because we all want to help you without interfering your diabetes regimen. I know my consultant goes through a list of options before considering the pump route - identify what is the cause of high BG, change insulin, different ratios for different times of the day or meal (I know during DAFNE, other diabetics who were running high needed a different ratio at different meal times based on their insulin sensitivity), make sure your insulin doesn’t have fine line cracks, is in date and your injection sites are in check.
     
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  9. Ica291

    Ica291 Type 1 · Active Member

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    Hiya,

    On the libre front, I self funded it for over a year and because I was scanning my arm over 10 times a day, I qualified for it on prescription. However, finger pricking, I was terrible at - lucky if I did it more than three times a day.

    So I'm just wondering if you bought a couple of libre, you might scan more than prick which would help get it for you on prescription?! Although I know they are pricey to buy and I had a good job so would never say make yourself bankrupt over it.

    There is other criteria too, I can't remember what it is, hba1c has to be fairly low (which is ridiculous, because I only got my hba1c down by using the libre).

    Not sure if I've helped or not, but they count scans as the same as finger pricks so if anyone can afford it, buy a few
     
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  10. Knikki

    Knikki Type 1 · Well-Known Member

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    Hello again @Kimberleyart1, I'm no expert but it almost sounds like your Lantus levels are not right, it could be worth looking up "Basel Testing" (sorry can't link on this device) but if you get the background right then it makes many other things much better and easier to control.
     
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  11. aealexandrou

    aealexandrou Type 2 · Well-Known Member

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    I am sorry to hear about your diabetes issues. I am only a T2D and what I say should be treated only as a suggestion to be discussed with your doctor. It appears to me that you need to reduce the quantity of insulin you are taking and to do that you need to reduce your carbohydrate intake. It is important that this is monitored at all times so that any reduction in carbs is met with the appropriate reduction in insulin. You don't want to get to the point where your body thinks it is starving as that might risk ketoacidosis. You should therefore convert to eating a lot of vegetables, high level of fatty foods (butter, nuts, olive oil, eggs, etc.,) and meat for protein. Meat also contains fat and if your not vegetarian good for you. Fish and walnuts will also give you Omega 3.

    Eating fatty foods will not make you fat. If you can reduce your carb and insulin intake, your liver will eventually break down your own fats into ketones, which it will use instead of glucose (sugars) to feed from. This is a very stable energy source for your body which does not fluctuate. You will then only require to use a small amount of insulin to deal with the modest carbs in your body and maintain a steady blood sugar reading within the normal range of 4 to 6 that non-diabetics enjoy. The reduction in insulin will reduce and possibly resolve your insulin resistance.

    Because T1Ds manually maintain their insulin levels depending on the carbs they take it is sometimes too easy for them to eat what they want and as much carbs as they want believing that they can simply deal with the sugar in the blood through their insulin intake. It can be forgotten that T1Ds can also suffer from insulin resistance in the body caused by having high levels of insulin over a prolonged period of time in the blood. This high level of insulin will over time be detrimental to your body as it leads to other health issues including neuropathy, retinopathy, kidney and heart problems and has also been linked to Alzheimer's. As you have discovered the insulin resistance means that your organs and muscles are not taking up the sugars from your blood and this in turn sends signals to your brain asking for more sugar, despite the fact that you have eaten. You then have to inject more insulin which is simply poring more petrol on the fire.

    Insulin resistance is what T2Ds have to deal with on a daily basis and you need to adopt some of our methods of dealing with that issue. Moving to a low carb high fat diet (or keto diet) will not reverse your T1D, but it will at least stabilise it and keep it at a more constant low level, which should make it easier for you to control. Remember because you are a T1D it is not as easy for you as it is for a T2D to go straight into this diet, and you should do it slowly and with consultation with your doctor.

    I hope this helps and wishing you well.
     
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  12. helensaramay

    helensaramay Type 1 · Expert

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    @aealexandrou I understand your comments relate to the insulin resistance.
    However, suggesting someone with type 1, high BG and ketones "to reduce the quantity of insulin you are taking" is dangerous and could become DKA.
    The suggestion to reduce carb intake has been given and could be useful but no no no no no with regard to reducing insulin until the OP's BG is reduced.
     
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    #12 helensaramay, May 21, 2019 at 7:18 PM
    Last edited: May 21, 2019
  13. MeiChanski

    MeiChanski Type 1 · Well-Known Member

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    OP would be still be running high in spite of low carb if there is a lack of insulin on board or back ground insulin is not quite right. We need OP to try and get help as soon as possible because DKA is very serious. There are a whole host of factors why OP is having some insulin resistance, from hormones to bad injection sites.
     
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  14. Juicyj

    Juicyj Type 1 · Moderator
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    Hello @Kimberleyart1 :)

    How long is it since you gave birth ? It can take up to a year for the body to adjust after pregnancy with hormones settling down and this can impact on your control.
     
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  15. Kimberleyart1

    Kimberleyart1 · Member

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    My consultant is the issue she’s always cancelling clinics not just for me but for everyone and she’s the only consultant at my hospital
    I never thought of asking my gp if there is another hospital I could use. I’ll try that next!
     
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  16. Kimberleyart1

    Kimberleyart1 · Member

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    1 year and 4 months nearly x
     
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  17. aealexandrou

    aealexandrou Type 2 · Well-Known Member

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    I agree, which is why I mentioned twice that it can only be considered after consultation with the lady's doctor and that it is monitored at all times. T1Ds are not immune from the dangers of high carb and high insulin intakes. Sooner or later Kimberleyart1 will have to address that issue particularly now that she is insulin resistant. The reason she cannot judge her present insulin to carb intake is because she has developed this resistance and more insulin is needed than she would normally take for the food consumed. The situation can also be more complicated because some T1Ds are on a slow releasing insulin which requires very controlled eating habits and cannot be adjusted easily when more or less insulin is required, which can then lead to hyperglycemia or hypoglycemia. For this reason any move to a low carb, high fat diet, must be subject to consultation with the patient's doctor and carefully monitored. In addition Kimberleyart1 is also noting high levels of ketones in her body. That means that her body cannot feed from the carbs already consumed and is going into starvation mode. If that is the case she needs to adapt her body to actually using and feed from the ketones rather than having then lying around and poisoning her system.
     
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  18. MeiChanski

    MeiChanski Type 1 · Well-Known Member

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    I hope you're okay, if you urgently need help now please call NHS111. We all know high BG and ketones is not very nice. there are pump friendly hospitals, you might need a google search to see which one is available in your area or if your GP is willing to refer you to that hospital - it could be a long stretch.
     
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  19. aealexandrou

    aealexandrou Type 2 · Well-Known Member

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    I agree, insulin resistance (however it is caused) means that increasing doses of insulin is required to deal with her food intake. I would also assume she is also feeling hungry on a regular basis which in turn results in higher intake of carb rich foods. Clearly Kimberleyart1 has been asking from help for some time and not unusually it is not forthcoming. Until that help does materialise her diabetes doctor can at least help her try to restore balance in her diet, as suggested, to mitigate for the excessive insulin and I would imagine carbs, the two usually go hand in hand, because she cannot carry on as she has been indefinitely as it can only worsen.
     
  20. Diakat

    Diakat Type 1 · Moderator
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    @Kimberleyart1 has had some good advice I’m posts above. Unfortunately for T1 there is not always a linear relationship between carbs and numbers. Getting help from the medics is a great idea but ultimately diabetes is self managed so we need to stay on top of dose adjusting and life balance high goes beyond simple carb management.
     
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