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Strong positives for GAD and Islet cell antibodies - T1?

Discussion in 'Type 1.5/LADA Diabetes' started by Jo Bodensee, May 5, 2018.

  1. Jo Bodensee

    Jo Bodensee · Guest

    My C-Peptide is still in the mid-normal range. This means that I'm still producing my own insulin, right? Do you know how often this will be checked? I guess we have quite a different healthcare system here in Germany, so maybe you can't answer that...
     
  2. Jo Bodensee

    Jo Bodensee · Guest

    So, I got a firm diagnosis of T1D today. He didn't talk about the fact that it was late-onset or anything like that. I will be going to a clinic tomorrow to get my levels regulated and have an intensive diabetes schooling. I'll be there for 5-10 days as I understand. I have a lot of things to organise and get ready before I go...
     
  3. Alexandra100

    Alexandra100 Prefer not to say · Well-Known Member

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    I guess you'd have preferred T2, so commiserations abut that. Good to have some definite info, and it sounds as if they are going to take excellent care of you. I have never heard of anything as intensive as that here in the UK. By the time your course is finished you'll be a real expert and able to be hugely valuable on the Forum. It will be very interesting to hear about the approach in Germany, if you have time to tell us abut your course afterwards (or even during).
     
  4. Daibell

    Daibell LADA · Master

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    It's not common in the NHS in the UK to do repeat c-peptide tests. In fact they don't often do c-peptide at all. I had mine done privately. I was put onto Gliclazide and Sitgaliptin for a few years whilst in retrospect I was in the honeymoon period and then after a battle with the GP I was given insulin which has been a life saver. My c-peptide was at the bottom of the normal range. I've never had any training courses as I'm still listed as T2 as my 'expert' GP said I wasn't T1 therefore T2. Yes, that's the NHS....
     
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  5. Jo Bodensee

    Jo Bodensee · Guest

    As I understand it, they do training for both T1 and T2 here in separate or some mixed courses. I'm sorry to hear that it's not readily available for you there. I don't know how often C-Peptide is done here either. I'd never heard of it before. I go every quite often for blood work, but this last round was the most I've ever seen - must've been 7 pages.

    I'm sorry that your doctor isn't willing to see you as T1. They treat T1 and T2 quite differently here, especially in the newly diagnosed stage in terms of how they educate you. As well, not every diabetes doc will take on a T1 for chronic care because they are required to have a diabetes assistant full-time on staff. So, I will have to see where I can find one that will take me on for chronic care. It won't be in my hometown here but somewhere hopefully not too far away.

    Anyway, I'm just in the clinic now and will be here for about a week until they get me straightened out.
     
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  6. Daibell

    Daibell LADA · Master

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    Hi again. When my GP finally told me I needed to move to insulin she referred me to an excellent DN in the local GP surgery, and not the clinic as I wasn't 'T1' despite being on Basal/Bolus insulin. I've had excellent support from both that DN and a newer one. I've never felt I've missed out not going to the 'Clinic' as a T1 or not having any training. My DN showed me how to carb-count in 15 minutes which the NHS can take up to a week's course to do (it does include a few other things). So for me insulin has been easy and this forum provides a wealth of knowledge for hints and tips. It may be you will benefit from a higher level of support which it seems is offered in Germany.
     
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  7. Jo Bodensee

    Jo Bodensee · Guest

    Good to hear that you learned the carb-counting so quickly! I have a hellish fear of that and all the calculations. I hope it goes as well for me :)

    I will definitely be looking into some of the other threads to see how much I can figure out from here. It seems like so much to know, kind of overwhelming.
     
  8. Alexandra100

    Alexandra100 Prefer not to say · Well-Known Member

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    Maybe that's where Dr Bernstein's very low carb diet scores? Small amounts of carbs, small amounts of insulin, small mistakes and also small calculations. It will be interesting to see what your trainers have to say about low carb.
     
  9. Alexandra100

    Alexandra100 Prefer not to say · Well-Known Member

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    According to Dr B, the best course of action for both T1s and T2s is to follow his Laws of Small Numbers and keep our bg normal. To do this we start with very low carb and if necessary progress to Metformin, maybe other meds, and then insulin in the smallest dose possible. Personally I suspect that I am in the honeymoon period of LADA. I want to prolong that as long as possible, but I don't want to ask for further tests because I think Metformin is helping me and the knee-jerk reaction to a T1 diagnosis is to stop prescribing Metformin. The moment I see my readings rise in an unexpected way I will be back to my doctor demanding tests.

    I suspect that one of the reasons it is hard to get a firm diagnosis of LADA is that the tests are not reliable and there is no consensus in the medical world as to whether slim people with bg problems are just T2s who happen to be slim OR late onset T1s ie LADA. Indeed there is little consensus on anything to do with diabetes. Some T2s end up on insulin, and some people with LADA are able to manage without insulin for years. I believe Dr B when he claims that by keeping bgs low and stable we can hope to preserve our remaining beta cells and go on producing at least some insulin, as well as avoiding complications.

    Relatives of both T1s and T2s have a greater chance of developing diabetes. I have educated my 50+ year old daughter to test. So far she is fine, but she is going to test once a year, which is a great relief to me.
     
  10. KK123

    KK123 Type 1 · Well-Known Member

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    Hi Alexander, so Dr B is saying that a type 1 can start off with seeing if diet works, then 'if necessary' go onto metformin and then insulin if required? I can't imagine any medical professional telling someone diagnosed as type 1 to do that, if it worked wouldn't that be classed as a cure for type 1? I'm not sure I would class a type 1 diagnosis being changed from metformin to insulin as knee jerk, surely that is a massive risk if they didn't do that?
     
  11. Alexandra100

    Alexandra100 Prefer not to say · Well-Known Member

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    Hi KK, firstly I am a woman and my name is Alexandra. Alexander is a name for a man. For some reason I do dislike being called Alexander. Maybe because my father was called Gordon Alexander.

    Here are 2 quotes from Dr B's website:

    "Many diabetics can be treated with diet alone, and if your disease is relatively mild, you could easily fall into this category. Some patients who have been using insulin or oral agents find that once on our diet they no longer need blood sugar–lowering medication. Even if you require insulin or other agents, diet will still constitute the most essential part of your treatment."

    "If you’re going to control your diabetes and get on with a normal life, you will have to change your diet, and the when is now. No matter how mild or severe your diabetes, the key aspect of all treatment plans for normalizing blood sugars and preventing or reversing complications of diabetes is diet. In the terms of the Laws of Small Numbers, the single largest “input” you can control is what you eat."

    You can read more here: http://www.diabetes-book.com/restricted-carbohydrate-diet/

    I'll leave you to fight it out with Dr B.
     
  12. KK123

    KK123 Type 1 · Well-Known Member

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    Alexandra, I am SO sorry, I know you are female and it was a misprint on my behalf, apologies! I wonder if Dr B thinks you can be a mild type 1? I find it all fascinating as there is so much information and differing opinions out there. I am going to get and read his book!
     
  13. ringi

    ringi Type 2 · Well-Known Member

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    Remember that "type1" is not a well defined as most people like to think, and someone can test positive for antibodies, but not have very high BG. If BG is very high Dr B would start with insulin, then see if diet and Metformin etc allowed the insulin to be reduced. He also monitors people's progress a lot more than the NHS, so can take corrective action quicker.

    He makes use of an "engineering mindset", seeing how a "system" responds to changes in its "inputs", rather than assuming that a "label" someone has been given defines the outcome for the rest of their life. Personly I think he uses insulin too much in people with Type2 rather than first proving their insulin level is low, but with his diet advice (plus close monitoring), it would soon correct itself and the person stop taking insulin.
     
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  14. Alexandra100

    Alexandra100 Prefer not to say · Well-Known Member

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    Wow! What a generous post! Yes, I do know misprints can arise SO easily, even with a proper keyboard let alone on a mobile phone or tablet. Sadly I'm not a patient of Dr B, but I am convinced by a lot of what he says. I'd never follow anyone's opinion blindly, however. IMO everyone gets some things wrong and everyone gets some things right. (Even Hitler was kind to his dog!)

    In the interest of balance, here is a recent post from another thread, by @Scott-C

    "Think Like a Pancreas by Gary Scheiner is a good [book].

    For those of us with cgm, Sugar Surfing by Stephen Ponder and Beyond Fingersticks by William Lee Dubois are helpful.

    They're all T1, GS and SP are also endos, and WLD is a dsn, so they've all dealt with it personally and professionally.

    I think they are less emphatic about things than Bernstein and give T1s more options than he does. SP has a chapter on how to insulin-stack for burritos, which would probably have Dr B fainting!

    I accept that moderating carb intake is a good line - I do it myself, most meals are around 50 to 80g (although many would say that's too much) - but he just goes too far.

    He's a product of his background. Had complications because of the primitive treatment methods in his youth, recovered because of being able to test and modify diet.

    What I feel he's missing is that in this day and age, newly dx'd have from the start modern bg testing methods, better insulins, some have cgm, so it's perfectly possible to keep an eye on things from day one in a way which he wasn't able to, figure out which carb/bolus combinations work to stay in range, without ruling out an entire macro group.

    There's been quite a few posts on this site by T1s who've gone down the Bernstein route. But they've then come back after a few months to say they actually would like to eat carbs after all. We're not talking crazy amounts here, not sugared popcorn at the movies, they just want to nip in to a local Italian cafe and have a 50g panini. Yet they feel guilty about it, because Bernstein says no. Even though a 50g panini with a bit of careful pre-bolusing is perfectly manageable with modern methods.

    His book has a large section at the start with quotes from clients, enthusing about his methods. I'd like to ask them how they feel about doing such a restrictive diet for decades."
     
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  15. ringi

    ringi Type 2 · Well-Known Member

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    When thinking about Type2 and Type1, Type 1.5 etc, let's remember that when Bernstein worked out his methods, these labels were not even in use..... (It was just "insulin-dependent", and "none insulin-dependent".)
     
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  16. Kailee56

    Kailee56 LADA · Well-Known Member

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    No, Dr B’s book is for type 1, 1.5, and 2. The information on oral agents is for those who still produce some insulin, not type 1’s. The diet advise is for everyone. Small amounts of carbs require production or supplementation of small amounts of insulin which results in smaller mistakes if/when they occur. The goal being stable blood glucose within the range of normal non-diabetic people.
     
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  17. Kailee56

    Kailee56 LADA · Well-Known Member

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    Actually, it was Juvenile and Adult Onset Diabetes. Insulin wasn’t even mentioned for what is now T2D. Yes, I am “mature”. , though not as “mature” as Dr B.
     
  18. kitedoc

    kitedoc Type 1 · Well-Known Member

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    Hi Jo,
    I hope the black humour jokes were not too much? (on the other thread)
    I agree with the general premise that controlling the BSLS is the main focus. The antibody readings and presence suggests to me that your pancreas gland is and has been under attack and your doctor may opine that insulin is the final outcome for management. With a changing picture, as your pancreas islet cells become less able to produce insulin on demand, your symptoms and blood sugars early on could have confused everyone.
    No doubt there may be discussion of whether you need to undergo other antibody tests ( As if you have not had enough) e.g. for coeliac disease and pernicious anaemia etc
    Another off diabetes subject it that I have a relative with colitis who was found to have small bowel involvement and because that affected her small bowel where vitamin B12 is usually absorbed she became vitamin B12 deficient.
    Also in some people coeliac disease can cause b12 deficiency and pernicious anaemia definitely does.
    Coeliac disease can affect other vitamin and mineral absorption and according to texts etc make the balancing of the insulin/exercise/diet vs blood sugar equation more challenging. I have a child with coeliac disease).
    Please stick like glue to those health professionals who are knowledgeable and who listen.
    Ask lots of questions and request the best and most effective treatment to keep those blood sugars in range and as even as possible.
    Please seek the support of your family and friends as much as you can. Accept lots of cuddles and displays of adoration from your husband and brood. Mum is the bestest!!
    Keep breathing steadily and evenly as you can. Learn about hypos just so you are prepared once insulin is prescribed.
    One step at a time. Best Wishes !
     
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  19. Jo Bodensee

    Jo Bodensee · Guest

    Not at all! I think it's a great way of dealing with it all :)

    I'm in the middle of a week-long full-time type 1 course. I've enjoyed it so far and my doctor has been super. He's very accepting of my ketogenic diet and has been nothing but supportive. I've had some low numbers this last week. Probably because I've transitioned into nutritional ketosis and my basal level was too high. I was only taking 4 units of the basal nights but they have asked me to drop it all together and just use a bolus at mealtimes. That's a bit of a challenge and I usually just end up estimating conservatively - most of the time I'm right on.

    Thanks for your post!
     
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  20. kitedoc

    kitedoc Type 1 · Well-Known Member

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    Perhaps a strong hint to your family is in order. You wish to be presented with either a star badge to wear or a star chart full of stars to celebrate your achievements.
    Also you can present them with a hypo recognition and action lesson. The persuasion for them to excel being that if they all behave they get to eat the desserts unsuitable for you !
    Enjoy the journey !
     
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