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Update- please help!

Discussion in 'Type 2 with Insulin' started by lcarter, Aug 14, 2019.

  1. lcarter

    lcarter Type 2 · Well-Known Member

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    Hi all x

    Not sure if you recall but I have been diagnosed as a type 1 for 11 years...now over the course of 4 months and lots of tests, it has come back that I'm actually a type 2 diabetic and I'm just in shock.

    So I'm on insulin, toujeo x 40 once a day, and fiasp fast acting with carbs.

    The dr wanted me on slow releasing metformin 500g 4 times a day, but I've reacted so badly to this I have had to come off them entirely (intensely bad diarreah etc.) But these did make my levels better but wasnt worth the stomach pain and the constant runs, even on one a day.

    I've tried doing low carb and high healthy fat, and although this keeps my levels kind of steady, I'm still not getting any weight loss or any lower sugar readings.

    Can anyone advise me what I am doing wrong? Before I completely give up and try slimming world
     
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  2. ert

    ert Type 1 · Well-Known Member

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    Wow. It must be amazing not to be type 1, though you must feel upset and confused at the moment. Does that mean that you will eventually be able to come off insulin?

    When I started metformin when I was waiting for a proper diagnosis, my GP advised I start very slowly with the dosing, just one table every third day and slowly increase my dose from there, building to one tablet a day and then increasing to two every third day etc. It helped avoid the side-affects.
     
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  3. KK123

    KK123 Type 1 · Well-Known Member

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    Hi there, how fascinating. Can you tell us why they have come to that conclusion after so long? x
     
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  4. porl69

    porl69 Type 1 · Well-Known Member

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    WOW 11 years on insulin and now being taken off!!! How are your BGs at the moment? How have they come to this decision after such a long time???
     
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  5. ickihun

    ickihun Type 2 · Master

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    Hi @lcarter.

    I'm also on Toujeo300 and novarapid. I'm currently losing weight because I got to 139kgs on huge doses of insulin. I'm losing due to a bariatric surgery now but before I had to lose to be accepted for op so I've done the 800cals diet which was milkshakes and a veg dinner. I've done low carb in various amounts and various amounts of fat. It resulted in me just burning some fat, not all. My blood results varied too with some great results in some areas but not in all. Mind u I hv other medical conditions so very difficult to serve so many needs.
    I decided weight loss was my biggest need as I could get good bgs in any of the above diets with insulin and with varied reductions in insulin units but weight loss was needed as I'm a old mum with young children, one with special needs. I wanted weight off for less insulin need and longevity for my kids.
    Ive had diabetic symptoms since I was 5/6yrs old. My weight has ballooned but reduced only on very low calories. The hunger before my op was sabotaging my weight loss so I decided a Roux-en-y op had the best benefits, for me.
    I now hv no hunger but hv (nearly regimented) 3 meals, no snacks or very similiar.
    I'm alert to brain hunger but I honestly feel it's carb cravings. Or which I'm well rehearsed at putting at bay. (Eat low carb nibble and next day revise what I ate).
    I'm in no way suggesting bariatric intervention, that would hv to come from your consultant only.
    However reducing carbs and calories (low fat, low sugar, low other carbs too) reduces my insulin units and body weight.
     
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    #5 ickihun, Aug 14, 2019 at 3:40 PM
    Last edited: Aug 14, 2019
  6. Resurgam

    Resurgam Type 2 (in remission!) · Expert

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    You have seen some big changes both in treatment and your relationship with food - it might take time to get things sorted out.
    I could not take Metformin without terrible consequences, both physical and mental when combined with Atorvastatin - but by avoiding high carb foods my metabolism seems to have recovered.
    I have been able to relearn the over 300 songs and to begin to sing them from memory again.
    To eat low carb is, in my opinion, to have the best option - far superior to normal eating once you get into the routine.
     
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  7. DCUKMod

    DCUKMod I reversed my Type 2 · Master
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    Hi Lcarter - Some folks do have issues with Metformin. Did your Doc swap you over to the slow release variant? many get on a lot better with that.

    Edited due to me sloppy reading - I see you're already on the slow release. Apologies
     
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    #7 DCUKMod, Aug 14, 2019 at 4:11 PM
    Last edited: Aug 15, 2019
  8. Caeseji

    Caeseji Type 2 · Well-Known Member

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    I still find myself being absolutely blindsided by your story I have to admit because I have never really heard of that. I am sorry that it is getting so hard to cope at times though, I found myself being a LOT better with XR Metformin but it's not for everyone.

    Personal experience here so don't take it as gospel but once I went down to 18:6 fasting with two meals per day and upped my protein in relation to fats that's when I breached into the 14 stone category after being stuck for a while. I think my body likes it more and it keeps me in the 4's basically all day most of the time (just not right now with this cold keeping me in the 5's).

    Perhaps try that a bit? Mediate on the fats a little, eat protein to satiety and keeping the carbs low? Other than that perhaps discuss other treatment options with your doctor.
     
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  9. EllieM

    EllieM Type 1 · Well-Known Member

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    I thought protein counted as carbs if you ate too much of it? Or, at least, I was told you had to carb count excess protein at half the carb rate???

    T1 here, boggled by how someone can be misdiagnosed for 11 years. I've heard of smaller numbers, but not as much as 11.

    @lcarter , so presumably your c-peptide shows that you're still producing insulin? It would be awesome if going low carb (I suspect very low carb), could make you come off insulin.... Good luck
     
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  10. Ruth Holdstock

    Ruth Holdstock · Member

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    Hi!
    I’m sorry to hear you’re struggling so much. I struggled with weight loss for a very long time because I think it is much harder when you are diabetic as food obviously reacts differently. I started using a personal trainer who has significant knowledge of weight loss and diabetes and he has really helped me to understand how weight loss works and how to keep healthy with my diabetes x
     
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  11. DCUKMod

    DCUKMod I reversed my Type 2 · Master
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    @lcarter - Apologies for my earlier post, querying if you'd tried Metformin SR. Poor attention to detail from me!

    In terms of your Metformin, you say you had issues taking just one tablet a day. Did you try taking one every couple of days, to allow your body to make a really slow adjustment? It's such a shame, as it can be pretty effective for insulin resistance.

    Forgive me for asking so many basic questions, but could I ask you what your primary goal is in all of this? Sometimes I wonder if we, inadvertantly, foist goals and objectives on members. Your circumstances are so unusual, I'm conscious your objectives might be different, bearing in mind you already have a few diabetes miles on the clock..
     
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  12. Caeseji

    Caeseji Type 2 · Well-Known Member

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    It’s true that type 1’s do so this is a bit of an odd situation, if she is producing her own insulin as per the tests then it shouldn’t be too much of a problem. The issue is if she is producing enough to cover for it as a T2 would.
     
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  13. HSSS

    HSSS Type 2 · Well-Known Member

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    Boggled as we all are I would imagine that having been on insulin for so long you will be very highly insulin resistant, thus going a bit low carb just isn’t enough. It’s shown a reaction though by stabilising your levels so that’s still a response. How many carbs are you eating a day? How long since you started this?

    Honestly, I think you need to give it longer. Rome wasn’t built in a day and the resistance has been there a long time. I also think you need to go very low carb (keto) if you aren’t already but obviously great care will be needed balancing insulin against this carefully to avoid hypos.

    Slimming world will pump you full of “free” carbs if you’re not careful. Not good at all for a type 2.
     
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  14. ShortStuff

    ShortStuff · Well-Known Member

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    I’m not st all surprised you’re in shock - I guess it’s good news, but 11years they’ve treat you as T1. That's pretty scary

    I think probably the most valuable thing you can do for yourself is to try to come to terms with this misdiagnosis and get your head around NOT having T1D first!

    I’m ‘diet controlled’ low carb. I’m vegetarian and don’t eat eggs, so getting protein is a but of a trial, but with exercise (just walking 10,000 steps min a day) I can keep my Bg in the normal range (at worst in the pre diabetic range) What I cant do is lose much weight - it’s glacially slow (even with TRE & IF) so I’m going to try fast 800 when I get back (currently in holiday in France, enjoying the odd off piste bits & pieces!)

    Slimming world really isn’t the answer for T2’s (not most people I don’t think, that’s why it’s a big business, if it worked they’d go out of business. IMHO). Your body is coping with a lot, give it time to settle

    When I was first diagnosed T2 I found Dr Briffas book ‘Escaoe the diet trap’ brilliant, lots of information in an easy to read format. I’ve since read a lot by Taubes, Bernstein, Jason fung & many others and truly believe low carb IS the answer to better BG levels, but for some of us weight loss requires a restriction in calories as well hence me going to do the F800
     
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  15. Norfolkmell

    Norfolkmell Type 2 · Well-Known Member

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    Hi Icarter
    Gosh no wonder you're stressed. I've never heard of that but I don't know that much about type 1. You've come to the right place to get support and information, this forum is awesome.
    Please, please don't think about SW. I paid them every week for about three years and although I was very good with their diet my weight went down and up and down. In all that time I only lost a stone. Three years of being type 2 and on LCHF I'm five stone lighter on around 80g of carb a day, most days. I've gone down four dress sizes now and still losing. I'm unable to do much exercising as I have a lot of other problems but in the past year have gone from a bariatric wheelchair to a 'normal' one which will make life easier for my other half. But it takes time. Look around the forums, diet doctor recipes and read about LCHF it works. Also give yourself time to get over the shock, but badger your doctors to find out why they've decided after all this time you're a 2 not 1. Keep looking at the forums, you don't have to post all the while but here is your best resource. Just let us know from time to time how you are doing, we are all rooting for you.
     
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  16. Stang777

    Stang777 · Newbie

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    I am sorry for what you are going through, must be mind boggling. I am wondering what tests they did that confirmed you are type 2 and not type 1, would you mind posting what those tests are?
     
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  17. lcarter

    lcarter Type 2 · Well-Known Member

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    Hi all.

    I will respond later in detail but here is the general gist of it!

    I had glucose levels of around 28mml for approx 3 weeks despite taking insulin constantly. Tried increasing it, drs were baffled why I was so resistant.

    Met a new doctor who was fresh out of his training. He asked a few questions, and looked into my initial diagnosis all those years ago.

    Whatever test they did at the time of diagnosis shows I wasn't auto immune. But because they didn't think i was overweight, they went with type 1.

    I have never had normal sugar levels since. They didn't think anything of it, and I just continued to try to lose weight without actually managing to.

    So I asked the question.

    Why don't I ever have high ketones despite having high sugars levels all of the time?

    Good question, the new dr said. Off he went to speak to my usual consultant, and came back with an idea.

    What if they did the c peptide blood test?

    Ok, let's go for it.

    My consultant came in and told me he was purely going to entertain the new dr; if that was ok with me- because he was absolutely positive i was a type 1.

    Famous last words.

    The c peptide test came back saying I'm not only still producing insulin, I'm producing a hell of a lot.

    So they asked me to do as special c peptide urine test.

    Again, sky high amounts of insulin.

    They were baffled.

    So they asked me to do a 24 hour urine test.

    Sky high levels of insulin.

    I'm a type 2.

    I've now got my appointment in september with original consultant. Two consultants are now involved, one more senior than mine who said pointless doing GAAD as it's too late to be accurate.

    Hope that helps!
     
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  18. Resurgam

    Resurgam Type 2 (in remission!) · Expert

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    I suspect that - hope that - by eating low carb your poor hysterical pancreas will be able to calm down, dry its eyes and get its breath back whilst your metabolism gets itself the right way up again.
    Low carb is sustainable - you get to eat the good stuff, it requires little planing - as long as you move things from the freezer to the fridge in good time, though I have two fridges, one at a slightly higher temperature than the other for salad and fruit as I was constantly freezing salad and strawberries when I put things in there to defrost, so I separated the two functions.
    Low carb really works for weightloss - once insulin reduces the cells can release stored energy and that has a double effect, I am gadding about like a teenager these days.
     
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  19. Stang777

    Stang777 · Newbie

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    Wow, that is quite an experience you have had. Thank you for explaining it, and so well. Yea, if you are producing a lot of insulin, you are not type 1, unless that is one heck of a honeymoon all these years later, lol. I wish you a lot of good luck and hope things get better for you soon.
     
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  20. ickihun

    ickihun Type 2 · Master

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    So I'm guessing they are looking to get you off Toujeo300 etc. slowly. I'm a great believer that slower is far far better.
     
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