1. Get the Diabetes Forum App for your phone - available on iOS and Android.
    Dismiss Notice
  2. Guest, we'd love to know what you think about the forum! Take the Diabetes Forum Survey 2021 »
    Dismiss Notice
  3. Diabetes Forum should not be used in an emergency and does not replace your healthcare professional relationship. Posts can be seen by the public.
    Dismiss Notice
  4. Guest, stay home, stay safe, save the NHS. Stay up to date with information about keeping yourself and people around you safe here and GOV.UK: Coronavirus (COVID-19). Think you have symptoms? NHS 111 service is available here.
    Dismiss Notice
Dismiss Notice
Find support, ask questions and share your experiences. Join the community »

Confirmed LADA, test results

Discussion in 'Type 1.5/LADA Diabetes' started by rosemaree, Sep 7, 2021.

  1. rosemaree

    rosemaree LADA · Well-Known Member

    Messages:
    146
    Likes Received:
    37
    Trophy Points:
    68
    Hey everyone,

    I have just received test results confirming LADA :confused: not sure how to actually feel about it,

    My anti GAD antibodies are near 2000 IU/ml and my c-peptide is on the low side of normal, but I am still making insulin so think I must be quite insulin resistant to have such high sugar levels, although maybe my insulin production wavers,

    I have been injecting insulin since last week, my levels are starting to come down. I gave myself my first insulin bruise bump yesterday :blackeye:

    Interested to know what others results were like on diagnosis, and just experiences being diagnosed LADA,
     
    • Hug Hug x 3
  2. urbanracer

    urbanracer Type 1 · Expert
    Retired Moderator

    Messages:
    5,065
    Likes Received:
    3,670
    Trophy Points:
    198
    Diagnosis ? !
    My GP sent me to the Acute Medical Unit with blood sugars of 31mmol. The hospital DSN looked me up and down, told me I was Type 1 and sent me home with insulin, needles and a meter.
    I didn't get a GAD test for at least 6 months afterwards and all I can remember now is the words "strongly positive", I don't recall any numbers. I've never had a C-Peptide test, consultant at the time said it was pointless.
    Glad your glucose levels are coming down, welcome to our gang.
     
  3. Hertfordshiremum

    Hertfordshiremum · Well-Known Member

    Messages:
    253
    Likes Received:
    118
    Trophy Points:
    63
    Hi Rosemaree

    I was diagnosed 3.5 years ago now, I remember being relieved that I finally had correct diagnosis and could get the right treatment and worried as I had DKA fairly early on. Definitely look this up and avoid! Get some fast acting insulin just in case you become ill with an infection. Also probably during the first 6 months when some weeks just kept going wrong I felt upset that I have this. However I bought Dr Bernstein’s book from seeing so many follow his regimen here and it really helped me understand the big picture, the problems and anticipate a lot earlier and take action early when things happen that mess things up for me! I don’t think it’s been easy (I do have multiple autoimmune disorders so perhaps more complex than some) but I am getting much better at dealing with all the different situations! I have found this site very helpful and it’s nice to have others who understand.
     
  4. Fenn

    Fenn Type 1.5 · Well-Known Member

    Messages:
    950
    Likes Received:
    1,198
    Trophy Points:
    178
    I had my diagnosis changed today, mainly due to a c-peptide test of 0.05 and also my insulin is apparently too low for T2 but I am not sure it’s correct, I believe I am type two with an exhausted pancreas but really have no idea. Either way I’ve been on insulin for years so nothing changes for me. Best of luck, take your time, ask lots of questions here if you have them.
     
  5. EllieM

    EllieM Type 1 · Moderator
    Staff Member

    Messages:
    4,744
    Likes Received:
    2,368
    Trophy Points:
    198
    Not necessarily, if you're in the UK T1s on insulin are eligible for more technological goodies than T2s on insulin (unfair, maybe? But that's the NHS for you.)
     
  6. Fenn

    Fenn Type 1.5 · Well-Known Member

    Messages:
    950
    Likes Received:
    1,198
    Trophy Points:
    178
    Libre? He has filled out a form, but there is apparently criteria to meet and I couldn’t bring myself to lie when he tried to lead me to say I’m not hypo aware.

    May I say Ellie, I look forward to reading your posts, you always seem so kind. (Not flirting happily married….mostly lol)
     
    • Friendly Friendly x 1
  7. EllieM

    EllieM Type 1 · Moderator
    Staff Member

    Messages:
    4,744
    Likes Received:
    2,368
    Trophy Points:
    198
    I wouldn't go there unless I was. Aside from the honesty issue, it would probably lose you your driving license. However I live in the hope that cgms will be prescribed more widely in the long term, so you may become eligible anyway.:)
     
    • Like Like x 2
  8. rosemaree

    rosemaree LADA · Well-Known Member

    Messages:
    146
    Likes Received:
    37
    Trophy Points:
    68
    @urbanracer, Shew, I didn't end up in hospital but feel like I could have - my highest I tested was 29 mmol, and I had a few days where I could smell and taste what I assume was ketones. The reference on the test results for the anti GAD was that it is supposed to be less than 10, so I guess 2000 is strongly positive too :bag:

    @Hertfordshiremum, Thanks for sharing, I do feel a bit relieved in that I now know what I am dealing with and can stop blaming myself for not doing better. I thought about asking for fast acting insulin too as my doctor has put me on a 70/30 mixed insulin for now, but it seems like keeping it on hand would be a good idea. I have watched some of Dr Bernsteins videos, he explains things quite nicely, I should probably go back and watch more regarding type 1 and using insulin, definitely good to be aware of potential problems so that we can act quickly!

    @Fenn, misdiagnosis was always a concern of mine, but I used to have this idea that I was definitely type 2 in the back of my head because I didn't take good enough care of myself, or eat perfectly. The positive anti GAD test helped with that though, although there seem to be any number of reasons function loss, so it is hard to say! As long as you are doing well and feeling good!
     
    • Like Like x 2
  9. Madisons

    Madisons · Well-Known Member

    Messages:
    55
    Likes Received:
    10
    Trophy Points:
    8
    Hi, can someone explain how they were diagnosed as LADA? Like what tests were used, c-peptide, and anti-GAD? I was diagnosed as pre-diabetic but would like to confirm what type or direction I will be headed towards. My mother is diabetic T1-LADA (endo says...) so insulin right from the start at about 30-years old after her second pregnancy. I mean, am I doomed? Is is an autoimnume gene and that I'll eventually need insulin when my beta cells stop producing insulin??? I am so worried and scared, stressed and anxious, and mostly alone. I'm horrified of needles, awful at math to calculate...etc...Does a low-carb diet even work for LADA/type 1? Any help from LADA pros would greatly be appreciated. Thank you in advance...
     
  10. ert

    ert Type 1 · Well-Known Member

    Messages:
    2,371
    Likes Received:
    2,937
    Trophy Points:
    198
    LADA is a term thrown around on this forum but it is actually a diagnosis of type 1 diabetes. T1DM is characterised by rapid deterioration of insulin within 3 to 5 years of diagnosis. The c-peptide results are outlined here: https://www.exeterlaboratory.com/test/c-peptide-plasma/ Antibodies may or may not be present depending on the cause (viral or autoimmune.) Sometimes it is still a waiting game for a clear diagnosis.
     
  11. KK123

    KK123 Type 1 · Well-Known Member

    Messages:
    3,916
    Likes Received:
    2,472
    Trophy Points:
    198
    @Madisons, I agree with @ert, my Consultant said they don't use the term 'lada' as it is type 1 but with a slower onset. That's why 'low carb' may seem to work at first as your pancreas may still be chucking out some insulin (honeymoon period). Some people start insulin straight away, maybe in smaller amounts and others don't at first but soon end up needing insulin. The speed at which a person goes onto insulin varies of course and it depends on their personal situation, and there are arguments for using it immediately (preserving any beta cells you may have left) and not using it straight away. As for whether a low carb diet 'works', do you mean in order to delay having to inject insulin or do you mean in helping to manage those injections along with food? Either way, it may help to keep levels down just after diagnosis but eventually you will end up needing it. I was initially diagnosed with 'pre diabetes', 3 years later and I ended up in hospital and it was confirmed (with tests) as type 1. Just keep an eye on things would be my advice, I would ask for further tests given your family history (my Mum was the same).
     
    • Agree Agree x 1
  12. Madisons

    Madisons · Well-Known Member

    Messages:
    55
    Likes Received:
    10
    Trophy Points:
    8
    Thanks so much for your feedback. I meant "low carb" now to delay insulin injections. I am not on any meds, but fear the day that I will need insulin. I also have read that straight insulin right away to preserve the beta cells but like you indicated, honeymoon phase might not require it. I am just doing more damage then? So further tests is c-peptide and anti-GAD? Anything else? I am doing the bloodwork tomorrow morning. Should I be fasting for at least 12 hours?
     
  13. Madisons

    Madisons · Well-Known Member

    Messages:
    55
    Likes Received:
    10
    Trophy Points:
    8
    Hi, thank you for your reply. Not on any meds yet, so is it too soon to have an anti-GAD and C-peptide test? Is there any other tests? Is eating low-carb now extending the honeymoon phase? I am so scared and worried for the outcome.
     
  14. EllieM

    EllieM Type 1 · Moderator
    Staff Member

    Messages:
    4,744
    Likes Received:
    2,368
    Trophy Points:
    198
    @Madisons nothing to stop you from asking for cpeptide and GAD tests but not sure whether your doctor will agree to do them if you are still prediabetic. But remember that though there is a small genetic element to T1 it is much smaller than for T2 and given that the typical T2:T1 ratio is 10:1 you are still more likely to be T2 even though one parent is T1. (Though hopefully you won't progress from prediabetes to any kind of diabetes at all.)

    In your position I'd probably drop the obvious carbs and see if it helps. But honestly, the treatment for T1 is a 1000 times better than when your mother was first diagnosed and is by no means a life destroyer (I've been T1 for 51 years), so try not to panic.
     
    • Like Like x 2
    • Winner Winner x 2
  15. Circuspony

    Circuspony Type 1 · Well-Known Member

    Messages:
    876
    Likes Received:
    502
    Trophy Points:
    133
    Its been 4 years for me now - time flies :)

    I went to the GP because I'd lost a lot of weight (which I didn't have to lose) and despite telling me my BMI was fine he did at least test a urine sample and then nearly fell of his chair. Ran off to get the nurse's BG monitor which just read HIGH. Ketones in the urine and he should have sent me to A&E but I kept saying I felt OK so we compromised with blood tests first thing the following morning. Hba1C was 147 - and they still didn't send me to A&E because the practice nurse kept saying in my 40s I could only be a type 2. Nearly killed me with that decision because I soldiered on for 2 weeks with the BG monitor reading HIGH, ever increasing dose of gliclazide and a realisation that they were wrong and I did in fact have type 1

    So I insisted on a return GP appointment instead of the nurse and straight to A&E. They took bloods in a fairly relaxed way and then suddenly I was sitting in the waiting area surrounded by consultants who couldn't believe I wasn't in a coma. Lots of tests and straight onto insulin. I suspect it had been gradually building up for about a year looking back.

    I was positive for 2 of the different antibody tests and was invited onto a trial at Guy's hospital. In that trial they gave me a glucose solution and measured my c-peptide output over 2 hours. What was interesting was at the end of 2 hours my natural insulin production was picking up even though my BG levels reached 19. That 'sluggish' response has been there for the 4 years since diagnosis showing that I am producing some insulin but it rocks up to the party rather late! I have to be careful in the evenings still because exercise plus my body deciding to help out means I can hypo suddenly.

    I take relatively tiny amounts of insulin (about 7 units of Novorapid in the day and 13 Tresiba) but can struggle to remain within a consistent range. My body has a pretty volatile response to food irrespective of carb counting and although I'm not on the Guy's trial any longer I suspect my pancreas can still throw out natural insulin at times. There is a pattern throughout the day which I've had to learn to live with.

    Sorry - that's a bit of an essay!!! In hindsight I wish the nurses hadn't made carb counting and 'you can eat what you like so long as you inject' sound so straightforward because it isn't for me and isn't for most diabetics I know so you can end up feeling a failure. All I can say is it will be become part of your daily life but if you hit bumps in the road don't be depressed about them. No way can injectable insulin replace the sensitivity of a pancreas so we can only do our best
     
    • Like Like x 2
  16. rosemaree

    rosemaree LADA · Well-Known Member

    Messages:
    146
    Likes Received:
    37
    Trophy Points:
    68
    Thanks for sharing! I actually also lost a huge amount of weight before I was first diagnosed, I had it to lose but I wasn't really trying. Being bigger made the doctors completely blind to my problems though. I realised the other day, I was put on gliclazide and metformin, I fought with the doctors to come off of it, and they eventually agreed I could stop the gliclazide - it made absolutely no difference to my sugar levels, I took it as my diet working but didn't register it was a sign of type 1.5 even though I had been trying to get further tests done.

    I wish I could get more tests to understand it all, my c-peptide shows I still make low/normal levels, but my blood sugar at the time of the test was near 20 mmol so I don't quite know how to interpret it.

    It is definitely not so easy to be your own pancreas, especially when your actual pancreas decides to jump start at random :bag:
     
  17. ert

    ert Type 1 · Well-Known Member

    Messages:
    2,371
    Likes Received:
    2,937
    Trophy Points:
    198
    I'm sorry you are having a tough time. What was the value of your c-peptide test and how long have you had diabetes for? Do you use a glucose monitor to test your food before eating and after to see what foods are spiking your blood sugars to avoid?
     
  18. ert

    ert Type 1 · Well-Known Member

    Messages:
    2,371
    Likes Received:
    2,937
    Trophy Points:
    198
    Insulin isn't the easy option by any means. I'm not producing any insulin and find it a struggle as you do, like everyone does. It's because of the variability such as: the injection sites have fat building under the skin - this blocks or delays the absorption, the age of the insulin, hormones, weather, stress, sleep patterns, insulin resistance varying at different times of day, exercise, insulin follows a fixed curve and doesn't match the food you are eating, carb counting is just an estimate, etc, etc, etc. But I'm alive, and can have a normal life, and die of old age, and that wouldn't have been the case before modern insulins and blood sugar monitoring technology. That's what I keep telling myself.
     
    • Agree Agree x 1
    • Winner Winner x 1
    #18 ert, Nov 2, 2021 at 8:53 AM
    Last edited: Nov 2, 2021
  • Meet the Community

    Find support, connect with others, ask questions and share your experiences with people with diabetes, their carers and family.

    Did you know: 7 out of 10 people improve their understanding of diabetes within 6 months of being a Diabetes Forum member. Get the Diabetes Forum App and stay connected on iOS and Android

    Grab the app!
  • Tweet with us

  • Like us on Facebook