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Making insulin but positive antibodies

Discussion in 'Ask A Question' started by Rose22, Nov 25, 2019.

  1. Rose22

    Rose22 Type 1.5 · Well-Known Member

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    Hello
    Can anyone help with the latest news from my consultant, it’s left me confused and feeling a bit low! I was referred to consultant after 1.5 years of various meds but increasing blood sugars levels and hba1c going up and up. Gestational, prediabeic despite all my efforts 2 years ago was told Type 2.
    Now taking repaglinide lowest dose 0.5 before each meal. Dropping below 4 so been advised by consultant to drop morning dose. Seem to be sensitive to it. Makes me squeeze out insulin when eat.
    He’s said results are back (c peptide and antibodies) and that I make enough insulin, but I’m positive antibodies that type 1 would have.
    He now says he doesn’t think would help doing MODY test. Which was original plan. He’s saying I may need insulin over time...so I’m confused! Is this LADA? If positive antibodies? And why wouldn’t he say LADA? Do you need low insulin levels for that to be diagnosed?
    Sorry for all the questions I’m feeling really confused now, I just want to be told what type I am and go forward. I see consultant in 7 months time. But see diabetes nurse in January. Maybe the letter he sends to my gp will explain more.
     
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  2. Diakat

    Diakat Type 1 · Moderator
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    He may not say LADA because technically the NHS goes for T1 orT2 (or the other types) but not LADA.
    Antibodies equal T1.
     
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  3. Rose22

    Rose22 Type 1.5 · Well-Known Member

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    That would make sense, thankyou. I just found it really confusing, like he wouldn’t say what type I am. Repeated that I do make enough insulin, but that I’ve shown positive antibodies. That with time I may need insulin, like if I got an infection and became unwell, lost weight and very high blood sugars then would need to contact them to say.
    Is it just a waiting game for me then I wonder? I’m feeling a bit deflated as he’d said in last letter to my gp possible MODY and to test. I was chasing up if that genetic test was going to happen only to be told these results! So now I’m not possible MODY but possible type 1? To be honest I always doubted the automatic type 2 diagnosis was given as soon as my blood sugars went up, as I’m only in my 30s, bmi 26 so not low but not really high, normal blood pressure and cholesterol etc.
     
  4. ert

    ert Type 1 · Well-Known Member

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    The presence of ntibodies supports the possibility of type 1. Some people have antibodies present without ever getting any symptoms of diabetes. Type 1 also requires the deterioration to insulin within a time period.
     
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  5. Rose22

    Rose22 Type 1.5 · Well-Known Member

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    Thankyou, that is helpful information.
    I would say I do have symptoms of diabetes. If I don’t take any meds my blood sugar levels just rise over the weeks, up to 24s. I’m now taking Repaglinide and after 4 weeks I’m between 3.2-6.9 most days.
     
  6. Marie 2

    Marie 2 LADA · Well-Known Member

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    With type 1/LADA you make insulin for a while, years even until you don't. This is called the honeymoon period. Medication and diet changes sometimes help in this time period because you are still making some insulin. This is also one of the reasons people are misdiagnosed so much as type 2's at first.

    A positive antibody test means type 1 almost always. ( I think there are some odd reasons to test positive and not have type 1) A few type 1's do not have the antibodies but do not make insulin.

    A C-peptide test is done to see how much insulin you are making, higher normal or too high and it's a sign of type 2, because you still make insulin, you are instead insulin resistant and don't utilize it well. Low normal or below normal is a sign of being a type 1 as your insulin levels are decreasing. This number gets lower as time progresses with a type 1 as more and more beta cells are killed off that make insulin.


    Ask for copies of your blood tests so you can look at what they mean. Sometimes it is a waiting game for when you will require insulin. Doctors will really vary on how soon they want to put you on it. Most type 1's need some insulin within 3 years of diagnosis.
     
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  7. Rose22

    Rose22 Type 1.5 · Well-Known Member

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    That’s very helpful thankyou! I have just emailed the diabetes endocrinology department asking for them to send me copies of test results. Hopefully they do so I can see some numbers...not that they will mean much to me hehe.
    I asked for these tests to be done nearly 2 years ago when I felt I wasn’t a type 2, but my gp wouldn’t (one snapped at me that im not a type 1 so why would I have the tests and that I need to try a med to see how it works) and I asked the diabetes nurse but she said that only secondary care, ie consultant etc can do them due to funding.
    I sort of got the impression that it’s a wait and see case with me. But I was still surprised to be told positive antibodies. Yet in other ways not as I’d always doubted the type 2 just because I’d had gestational before rather than taking into account all the other factors.
    My grandmother was diagnosed type 1 in her 30s. So there is a family history. My grandmother and dad both have type 2.
    I’ll try and see the results and maybe I’m in the honeymoon period?
    Thanks for the information, it is great to not feel so lost!
     
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  8. KK123

    KK123 Type 1 · Well-Known Member

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    Hi @Rose22, I was first diagnosed nearly 3 years ago and went through a similar process. A C peptide test showed I was the 'lower end of normal' for insulin production and my GAD antibodies were positive, (I understand that this particular antibody rather than the various others) DOES go with 'LADA'. My Consultant also goes with type 1 rather than the term 'lada' as he said that term is not recognised as such but that those with a diagnosis later in life came under type 1.

    I was given insulin immediately and again, although there are differing opinions on this, they said that starting insulin straight away may help what was left of my beta cells to hang on in there! I did have a honeymoon period which I think I am still in, I take the odd unit of novarapid for some meals and 10 units of Lantus a day. My levels are good but I was told that WHEN they start to climb (not if) then I would need to increase the insulin. I strongly believe that by reducing carbs (not to a very low level) and taking small amounts of insulin I am stretching out the honeymoon period, in the beginning they did say I could stop the insulin to see how it went because I kept going low but after 3 months of that I could only keep my numbers down by eating practically nothing.

    Currently I take my insulin, watch my food and although I wasn't overweight and did lots of exercise pre diagnosis etc, I continue to do all of that in the hope that I can extend the honeymoon period which (according to my Consultant) is beneficial even if only for a few extra months. x
     
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  9. Rose22

    Rose22 Type 1.5 · Well-Known Member

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    Thankyou for taking the time to reply, that is really interesting.
    Sounds a bit similar to me, if I take nothing to help squeeze out insulin then my levels climb steadily. Now I’m taking the lowest dose but I’m dropping too low at times. I eat reduced carbs but don’t carb count or cut anything out altogether. I made that change 3 years ago, all the startchy carbs out and swapped to med style diet. Was disappointed as it helped but didn’t seem to as well as I’d expected! The consultant said on the phone I may need insulin at some point. If I am positive antibodies then I assume that’s a certainty, not an if but a when?! Interesting you are on a low dose as a protection method.
    I’m waiting for them to send me the results, I will look to see which antibodies it lists. Thankyou for all your advice.
    I’m so pleased I asked on here, rather than wait until January with my next nurse appointment to try and know, understand more.
     
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  10. KK123

    KK123 Type 1 · Well-Known Member

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    Rose, you are welcome. Don't be put off by the insulin, if I eat a no/very low carb meal then I don't need fast acting insulin for my meals. I found it useful to have the Lantus (basal) once a day because it keeps my fasting levels nice and steady and within range when not eating. Insulin (at this 'honeymoon' stage) gives you the benefit of being able to use it if & when you need it. Obviously your needs will change but I have been doing this for 3 years now and it gives me flexibility. x
     
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  11. Marie 2

    Marie 2 LADA · Well-Known Member

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    @Rosie22 I was misdiagnosed for over 8 years, luckily I was put on insulin fairly early. I had an uncle that had died from type 1, I swam 75 laps 5 days a week and am/was a strict vegan and ate very healthy. I asked my first GP and my first endo if I could be a type 1 because of my uncle as it made a lot more sense to me and was told no by both and they never even bothered to test me. I believe because I was never a skinny person. It wasn't until I switched doctors who sent me to a new endo that I was tested and diagnosed right.

    40% of type 1's it turns out are diagnosed as type 2's at first, and switching doctors seems to be a common theme of getting properly diagnosed. Misdiagnosis still happens way too often.

    When you have type 1, you have to rely on insulin for carbs. When you eat low carb, you also need some for fats and protein (at a reduced amount). You also have to have some just because your liver produces glucose all day long too.

    It is sometimes easier especially at the beginning when your pancreas is still producing insulin at odd spurts to reduce carbs for dosing. But carb reduction is not necessary as you just learn to take insulin for carbs you eat. I eat completely what I want, although I am a strict vegan. It is all about the proper dosing. But a type 1 eventually has to have insulin.

    Personally I think the sooner the better in using small doses of insulin so you start to get used to using it plus it will help keep blood sugars in check better. But you do need to start learning carb counting with it. That would probably help explain some of the lows you might be getting because you had a lower carb meal with the same amount of insulin use.
     
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  12. Rose22

    Rose22 Type 1.5 · Well-Known Member

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    Thankyou for your reply, it was really useful to read someone else’s story, and the similarities.
    I’m sorry to hear your Uncle sadly died from a Type 1. My grandmother did too, a heart attack. She was diagnosed as Type 1 in her 30s (all those years ago, without all the tests they can do now) my other grandmother died from type 2 complications, she got an infection on her foot, which she ignored, turned gangrenous and was amputated, she died in hospital shortly after. So the risks are very real. I wish doctors would listen to our personal stories and not just look at a BMI and automatically diagnose a type. In 2018 one doctor I saw said she wasn’t sure I was type 2 and wrote asking whether they should be looking to see whether I had a different type. This was sadly shelved by my own doctor, who even in the referral letter she reluctantly wrote a few moths ago, saying in it she thought I was type 2. Then she phoned me to tell me they might not even see me. It’s crazy really, she was basing all this on her assumption rather than any test results! So I am waiting for the consultant to send across antibodies results and I can’t wait for her to see them!
    I emailed the Endo department for my results but apparently the consultant has to authorise for me to have a copy, so I’m still waiting!
    I feel calmer knowing that one day I will need insulin and not to resist it. Especially if I feel better as a result.
    I think you could be right with a lower carb meal and then going low, as I cannot change dose of Repaglinide, it’s a set amount before each meal, and I’m taking the lowest possible dose. It’ll be interesting to see what my next hba1c is, hopefully lowest in a year!
    I see the specialist diabetes nurse so I am hopeful to come up with a plan with her in January. It’s been great getting useful info on here, will help me be more informed for when I see her.
    Many thanks.
     
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  13. Daibell

    Daibell LADA · Master

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    Hi. You need to understand that the NHS and DUK (not this website) remain behind the times with regard to diabetes types. We're getting there slowly. Many GPs have, like mine did, been trained to think that you can only have T1 if very young and that GAD needs to be positive. Neither of these are true. My newly trained Diabetes GP shouted me down when I said I was T1 and not T2 and just said I needed a normal balanced diet when I was failing on max dose Gliclazide and refused me insulin. I've now been on insulin for a good few years and my recent C-Peptide (private) test showed my own insulin still going down. Even though your insulin currently may be quite good it doesn't imply insulin resistance (unless you are overweight). It probably shows you are in the honeymoon period. I may be wrong of course and your GAD positive antibodies may never cause a problem but only time will tell.
     
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  14. LittleGreyCat

    LittleGreyCat Type 2 · Well-Known Member

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    I'm not sure that this is accurate.
    My IR test (private) showed that my insulin production was in the lower normal range but my BG was elevated therefore I had (I think) moderate IR.
    I am not overweight.

    Ah.
    "Your insulin is in the lower end of the normal range whilst your glucose is elevated. You have an increased fasting insulin resistance index."
    BG 7.4 mmol/L
    Insulin 7.7 mIU/L
    Insulin Resistance Index 2.28

    Type 2s who are sometimes described a TOFI (thin outside fat inside) can be normal weight and still have IR.

    Edit: got distracted and forgot to say that from using the Freestyle Libre my insulin response is very different morning and afternoon. I think that if I had been tested after 12 noon I might have had a slightly different result.
     
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  15. Rose22

    Rose22 Type 1.5 · Well-Known Member

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    Results are in! They have sent me across my test results...
    ANTI GAD 1083. U/ml 0-4.
    Anti Gad Antibody = positive.

    ISLET CELL 20.
    Pancreatic islet cell antibody = positive.

    Cpeptide 1311 pml/L
    Fasting glucose 9.7 mml/L. 3-6.

    This is how it is written on the sheet.
    They had told me I was positive for some antibodies seen in Type 1.

    I’m not sure what to make of it all...so I make a good amount of insulin (but was taking Gliclazide at the time of blood tests, a couple of months ago, which makes me produce insulin) but I’m anti body positive...
    Is the Anti Gad result fairly normal or high? Sorry not sure if anyone will know.
    So from this maybe I’m looking at them saying I’m LADA?
     
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