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Newly diagnosed - some questions. Thanks.

Discussion in 'Type 1.5/LADA Diabetes' started by 85percent, Jan 22, 2020.

  1. 85percent

    85percent · Member

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    I was hoping to keep this short but i couldn't - sorry. I hope some of you will take the time to read this and offer your knowledge.

    I am looking for some answers before my diabetic nurse appointment soon. At the moment im taking no medication.

    - I was originally diagnosed as Type 2. I went against advice of taking metformin (as type 2) as i wanted to control through diet. It was a struggle changing diets so I wasnt really successful - but it was also learning curve transitioning from my usual diet when i had no portion control or real idea of calories or macros i was consuming (I do now).
    - then about 18 months later after I started losing weight they tested for antibodies and they said im type 1 - autoimmune / LADA. My GP referred me to hospital consultant.
    - After i saw the consultant doctor he said i need to take insulin as GAD antibodies present. I said "no, not yet", again, I want to see if i can manage it with low carb. I know type 1 are deficient in insulin production and he was clear that i will need insulin. I just wanted to take a step back, assess, research for myself and get a grip on my diet before i committed to medication. So he setup a nurse appointment and asked me to keep records of tests 4 times a day and bring it (i have).

    Q1 - If antibodies are present does that mean insulin production is partially or fully impaired forever? Is it a definitive diagnosis? I know there can be a honeymoon period.

    Q2 - Should I ask for an insulin production test? Assumming they would agree (maybe not).

    I have been managing my Type 1 with low carb for last 3-4 weeks and i have my appointment soon with the diabetic nurse to determine how much insulin i need to take. I have been recording my blood tests consistently for last 3 weeks - 6+ times a day as i wanted to see what was happening after meals and gym and walking.

    - I have manageed to get my levels to between 5-7 outside of meal times. After a low'ish carb meal it usually doesnt go over 9.5-10.5 depending on what ive eaten. But usually in the 9's / under 9 after 2 hours of meal and then back under 7 after 3-4h and def under 7 at bedtime. So slow to return to normal range but it does get there.
    - If I eat some extra sweet stuff/ high carb then it can get to 11's but again it drops back to under 7 by bedtime.
    - im still tweaking my low carb diet and testing meals - im sure i can get it down alittle if im more consistent and limit / tweak some of the after meal 'dessert' choices. Im still learning and still fail sometimes. And the body will maybe adjust and insulin sensitivity might improve over time (3-12 months).

    Q3 - With the mmol levels ive mentioned will they advise i take some amount of insulin? Would i be at risk of hypo if i took insulin with my current levels? Ive neve had a hypo episode even after fasting for 48 hours (water only) - mmol was 4.8 before breaking fast and eating. Plan to do 72h fast but because I needed to log mmol after meals for nurse I haven't done it yet.

    Q4 - If yes, im thinking to delay taking insulin until early March (next consultant) appointment and then see what my HbA1c is nearer the time and if i managed to hone my low carb diet further. Im pretty sure ill be very clued up by then and i would guess my HbA1c will be close to normal... but that might not be good enough.

    - I dont want to take insulin but i will ofcourse if i have too. I also want it to be the minimum it has to be. Seems i will have too unless i can get into a "honeymoon period range" for however many years that may last.

    FYi, ive been supplementing some vitamins daily for 3 months+ (vitamins d, c, multivitamin, b vits, and magnesium etc - all basic levels) incase i had any deficiencies and exercising very progressively 4-5 times a week or every other day minimum (60-90 mins gym, cardio & resistance training) and walking. I feel pretty good and strong and no symptoms of any kind.

    My weight is stable. I could lose a further 20-30lbs depending on muscle replacement weight - and thats my plan slowly over the next 2-3 months.

    Q5 - There was a study i read about with rats that they said the islet cells had re-created. They fasted the rats for 4 days (very low calories / fasting mimicked) then they allowed them to eat normally for a period of time before doing another 4 days of fasting. They did 6-8 cycles of this. Ill try to find the link. Ofcourse its rats and its one study... Anyway, does any know of this study or any opinions?

    Thats it for now. I would really appreciate any feedback. This is long and i know many people, me included, dont like reading long posts... hope it all makes sense. I re-read it and edit shortly if need be.
     
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    #1 85percent, Jan 22, 2020 at 4:58 PM
    Last edited: Jan 22, 2020
  2. Juicyj

    Juicyj Type 1 · Moderator
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    Hello and welcome @85percent :)

    Dealing with a type 1 diagnosis is hard, if there have been antibodies detected then you will inevitably need to start taking insulin at some point, however the fact you aren't yet means you're experiencing a honeymoon phase where your pancreas is producing enough insulin to cope, however at some point this will change and you will require insulin, there isn't any way of sustaining this currently known to humans.

    Watching your blood glucose levels carefully will tell you at which point it will be necessary to start taking insulin and it's on this basis recording your levels is important. No one can tell you how long this is as its unique to you.

    It's good to take vitamins but this won't affect your bodies ability to produce insulin, maintaining your diet and keeping carbs to a minimum will help.

    You have to prepare yourself for the fact that you will inevitably require insulin though at some point, sorry but this is the reality you will have to face.
     
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  3. 85percent

    85percent · Member

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    @Juicyj thanks for replying and the understanding response.

    Would you think the nurse will advise I take insulin now based on my current readings? Just curious - what will be will be.
     
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  4. Juicyj

    Juicyj Type 1 · Moderator
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    Hello @85percent

    It would be very difficult for me to second guess your nurses decision here.

    The most important aspect of t1 management is keeping your blood glucose levels in range, so using insulin is to simply ensure that when do eat food that you can fall back into range around 2-3 hours afterwards to avoid associated complications with going high, using insulin does carry the risk of hypos but it’s far more important to avoid prolonged high blood glucose levels too.

    Using insulin isn’t something to be afraid of so please don’t be put off using it for the sake of your health.

    We are a friendly bunch here so any help we can offer please ask :)
     
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  5. annliggins

    annliggins Type 1 · Well-Known Member

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    I agree with @Juicyj @85percent ...insulin is your best friend in this battle. Get to know it ...dont push it away , dont be frightened of it ..youre going to need it to save you.....the sooner you get to grips with it the better id say . Keep on posting !!!
     
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  6. Seacrow

    Seacrow LADA · Well-Known Member

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    Wow. You're really getting a good look first hand at the diabetes roller coaster, as I like to think of it. OK, your questions, please bear in mind all of this is personal opinion.
    Q1
    A positive antibody test is usually taken as a definitive test for auto-immune diabetes. In theory, extremely rarely, you could test positive because of another auto-immune reaction happening at the same time as your blood glucose is rising, in practice positive GAD=diabetes. Will your insulin production be partially or fully impaired? Nobody knows. I'm 17 years in, doc accidentally ordered a c-peptide test last year, to my shock, I'm still producing insulin. Not enough, but there you go.
    Q2
    The NHS does not, as a rule do an insulin production test, I don't even know if it's possible. What they can do is a c-peptide test. One molecule of c-peptide is produced for every molecule of insulin your body produces, and c-peptide is a little more stable than insulin, so easier to measure. I've found diabetic nurses don't want to order it, but if a doctor sees you're interested and involved in your diabetes, they probably will (my experience, others may be different).
    Q3+Q4
    A type one who isn't on insulin is really going to upset some NHS staff. My guess at possible reactions vary from "If you won't take insulin I can't treat you" to "As long as you're extensively testing your bg and stay in contact that's fine for now". Hope for an understanding and sympathetic doctor and nurse. You will need records to show that you are in normal range for most of the time. As far as going hypo, the doctor may try to argue that you need to eat more carbs for your insulin (it's a bad idea, but some docs push it 'to gain stability' while on insulin). The doc may also say you need to take insulin now to 'cushion' your pancreas against the auto-immune reaction, I don't know if there's any evidence for this working.

    If the nurse/doc only had your bg levels, I'm fairly sure they wouldn't be talking insulin. It's the antibody test that has changed them onto the 'type one treatment track'.
    Q5
    Thank you thank you thank you. I've just done this, a very nasty puke-a-thon resulting in a no food 48 hrs, and was desperately trying to figure out why my insulin needs had gone down to 30%. Running away right now to try and find this study.

    Sorry it's long, I tried to break it up some.
     
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  7. becca59

    becca59 Type 1 · Well-Known Member

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    There is a train of thought I believe that by going on a small amount of insulin straight away may prolong the honeymoon period. This works I think by putting your pancreas under less strain. The trouble with type 1 is that so many things affect sugar levels in the body. Not just food. So yes going ultra low carb will help enormously, but will not be the only answer. For example, strenuous exercise and just getting up in the night to the toilet, illness and stress all make my levels rise quickly and by large amounts.
     
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  8. 85percent

    85percent · Member

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    If an admin reads this then this thread should be in LADA 1.5

    @Seacrow Thanks for your reply. So far the doctor has 'allowed' me to not take insulin but depending on how they read my readings they might be alittle more insistent ... but nobody can make me take anything. BUT thats not the point, I WILL take whatever I need to take. And I can continue to tweak my diet and adjust the insulin as advised by the nurse.

    continued... wouldn't let me post whole post in one go..
     
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  9. 85percent

    85percent · Member

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    My GP did do a c-peptide test and it came back - positive? In other words im still am/was producing insulin at that time. Only after this did my GP call the hospital consultant endocrinologist and got a GAD test completed which came back positive for antibodies.

    continued..
     
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  10. 85percent

    85percent · Member

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    I'll report back what happens.

    This is the beta cell study link. Website is alittle unconventional and the link to actual study doesn't work (ill try to find it later) https://betterbodychemistry.com/diabetes/regenerate-beta-cells/

    Thanks for your reply. I can see I might be posting regularly on this journey.
     
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    #10 85percent, Jan 23, 2020 at 3:58 PM
    Last edited: Jan 23, 2020
  11. 85percent

    85percent · Member

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    @becca59 Yes, ive also read / heard that about taking insulin early.. Dr Bernstein said it as well I think. Something I need to consider...

    I have alot to learn. I want to study it all now to best manage my type 1.5. Thanks.
     
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  12. KK123

    KK123 Type 1 · Well-Known Member

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    Hi @85percent, You sound similar to me in that my C Peptide was tested at the 'low end of normal' and my GAD antibody test was positive. However, my Consultant said emphatically, you are type 1 and you need insulin no matter how small the amount through and beyond this 'honeymoon' period. He said that this would prolong the initial period and probably assist my remaining beta cells. If I was you I would accept the insulin now, at least then you can use it as and when it is required even if it's only a small amount of basal for example without the need for bolus, or small amounts of bolus depending on meals. Insulin will be your lifesaver remember and honestly, it is nothing to be feared. To me, there is no reason why I would refuse it, to what end? If I was type 2 say then yes, I would try to carry on with no medication and diet only but honestly I cant' think of ANY benefit to NOT having it available right at the start of a type 1 diagnosis, it's not a poison and not to be feared. If for example, your body didn't make any other hormone essential for life would you feel the same? I know it's daunting but the sooner you accept your diagnosis the easier it becomes, please feel free to ask any further questions. x
     
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  13. 85percent

    85percent · Member

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    Hi @KK123, thanks. I'm starting to get the message... partly its because I don't want to take medication / have this problem, and partly its the dvla / insurance, possibilities of hypo's, and the potential for weight gain I keep reading about.

    ... how is it to lose weight whilst on insulin? Same as before if inject the correct levels appropriate for your intake and exercise?
     
  14. KK123

    KK123 Type 1 · Well-Known Member

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    Hi there, do you have weight to lose? I'm sorry, I don't know how easy it is to lose weight on insulin, my weight stayed the same, I definitely didn't put any on and did not need to lose any but I have heard others say that they did put some on. I think that generally if you are able to use the correct amount for your needs you will be ok?
     
  15. Swillbos

    Swillbos LADA · Member

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    It does take a while to get your head round a change of diagnosis from T2 to T1/1.5. The huge positive is that you already have an excellent understanding of how you react to different amounts of carb and exercise. Combining these with some form of insulin regime when you feel ready, should bring even better control. The one tool in your blood sugar armoury you may have to let go of when on insulin would be the intermittent fasting. But I am sure others can advise better on this.

    After seven years as a T2, things deteriorated quite rapidly for me last year; try as I might I just couldn't get my BS below 14. At re-diagnosis my ketones were 4+, I was really quite poorly and I think I did well to avoid ketoacidosis. You aren't at this point, and would do well to avoid it. Even though it wasn't what you wanted to hear, I am quite impressed by the way your GP and consultant have cut to the chase, at least you have avoided trying and failing on the other T2 drug options along the way.

    Last July I started on basal (long-lasting) insulin and am on a split dose of 10 units a day ie I take 5 units two times a day. So far I have managed not to have to start on the bolus (short-acting) insulin as my low carb active lifestyle generally keeps me in an OK range, but I have now come to accept I'll probably need to move on to that in the next year to get better control - T1.5 is a bit erratic in the honeymoon period as your production of insulin can vary considerably. I am still on Metformin as I actually had very good results both in terms of T2 control and weight loss.

    I am not saying resistance is futile, I think you are doing brilliantly with your current approach and should congratulate yourself on your success, but I too am firmly in the T1.5 happy to be on insulin camp! while still hoping to manage a very gradual approach to insulin intensification, by continuing to do the lifestyle stuff I learned in my time in the T2 gang :)

    Good luck!
     
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  16. Circuspony

    Circuspony Type 1 · Well-Known Member

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    I think the trouble with this study from a T1 perspective is our dodgy immune system is slowly and consistently killing off our beta cells. So even if some pop back to life / regrow they are just targets for killing off.

    I was diagnosed at 43. My hba1c was 147 on diagnosis and I'd likely had it for a while. The GP tried to treat me as a T2 but my body was too far gone, ketones were high and it was A&E with insulin within a fortnight.

    My honeymoon period has lasted a good while. I'm nearly 3 years since dx and have a little of my own insulin production. Some of that may be due to being part of a study for another drug that interfered with T-cells to slow down the auto immune response.

    I wouldn't worry about going on to insulin. I lose / gain weight in line with the exercise I do vs how much I've eaten in much the same way as I did before. I'm fairly low carb diet wise but having insulin available does give you more flexibility.
     
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  17. Hertfordshiremum

    Hertfordshiremum · Well-Known Member

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    Hi I was diagnosed as Type 1 LADA 18 months ago, I am still learning! I have found this site very useful especially for tips when having a problem. I too did not want to go on insulin, had weight to lose and was eating low carb. Since that time I have realised that there is a lot of information on preserving beta cells by taking background (basal) insulin, I would recommend Dr Bernstein's book 'my diatbetes solution' he is in favour of low carb diet and it's very informative. I saw on this site many people following it. my endocrinologist insists (I think debatable!) Metformin helps you lose weight (I took it short term as struggled with slight upset stomach even the slow release tablets - make sure you get glucophage the slow release one if you decide to try it.) Short term (8months) I think it helped me. I tried coming off it and as there was no difference to my blood sugars my nurse agreed there was no point in taking it anymore, I had met my target weight and lost some more.
    When ill your blood sugars go sky high, even without food. I ended up in hospital because of this (you will at some point get an infection or bad cold and may (every one is different , but you are at risk of this now) need fast acting Bolus insulin very quickly. Accept it and use when needed better than a 999 call. Certainly for me my range can change quickly especially when ill or exercising and this seems to be typical of LADA so careful monitoring is required.
    I lost 2 stone in 6 months when first diagnosed and on low level of basal (slow background) insulin, fast acting insulin only if needed, and 2x500g glucophage tablets, I was on a low carb 20g carb per day diet I slowly increased this to about 50g carb per day on the advise of the endocrinologist. Calories about 1000-1200 per day. I also exercise daily.
    Now I am maintaining my weight I eat between 60-80g carb per day and about 1200/1300 calories per day. I don't count so strictly now. However I cannot eat bread, pasta, rice and only very small amount of potato as sends my blood sugars high and seems to stop me losing weight. I hardly bother with potato any more. The carbs I do eat are oats (porridge every other day), one slice every other day of pure rye bread, yogurt and root veg. Insulin is natural and vital for you to live, please do accept it but ask to start slowly. If you are eating carefully and exercising I don't think you will gain weight, remember I lost 2 stone. Personally I am glad I was persuaded to try Metformin short term, as the combination of this and the low levels of insulin worked very well and I can say I am slim for the last year. Feel free to ask questions, do lots of research and I hope you find the solution you need, I can really relate to your post so have a lot of hope that you will be ok.
     
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  18. cz_dave

    cz_dave Type 1 · Well-Known Member

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    I agree with others in this thread and I also think it's the consensus in this forum: get started on exogenous insulin fast. It will help you preserve whatever insulin production you still have left - perhaps for years to come.
     
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  19. Millie74

    Millie74 · Well-Known Member

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  20. Millie74

    Millie74 · Well-Known Member

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    All of your questions are really useful. I am in the same position. I was diagnosed type 2 in January with a hba1c of 96. By August it was still at 56mmol despite a BMI of 25 after weight loss and low carb under 50g a day. I had the GAD antibody test. It was positive at 1679 and c peptide was normal. My appointment with endocrinologist is not until March 12th. Long wait. A diabetic nurse called me. The endocrinologist told her too. My last hba1c in December was 45 mmol after further reducing carbs. I am on metformin. Like you worried about insulin. I teach Dance and fear hypos. Also losing driving license a concern. With a few treats at Christmas I had some high bs. Highest was 14 after a tiny bit of icing off side on my husband’s cake. Got back on low carb in Jan and been good. Mostly under 8.0 2 hours post meal. 6-7 fasting. The letter from endocrinologist to GP says thanks for referral. Given positive high antibodies may be LADA. How do you know if you definitely are 1.5? Was just told by GP c peptide normal. I continue to low carb in hope can avoid insulin. Was on it during pregnancy 13 years ago. Hated it and the hypos.
     
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