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Help with LADA/NHS

Discussion in 'Type 1.5/LADA Diabetes' started by HigherStrength, Oct 9, 2021.

  1. HigherStrength

    HigherStrength Type 1.5 · BANNED

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    The complaints would be:

    1. Failure to carry out required testing to obtain correct diagnosis - problem is, LADA is still grey area?
    2. Misdiagnosis a second time?
    3. Non-referral to endo in timely manner?

    I think I would be wasting my efforts.....ideally I want to get into contact this mystery endo who diagnoses T2D from afar, and
    Insulin and C-peptide levels were relatively low (6 and 2.2 respectively) suggesting insulin deficient, not resistant. Married with the profling, lifestyle, carb intake, history and going from perfect numbers for 5 years and then suddenly, without any lifestyle or dietary changes, higher BG higher indicates LADA., which is slow progression. Presently my average BG is around 13mmol with 25 grams of carbs per day intake. Furthermore, I did not "lockdown" or change my activity levels, other than increase them, the past couple of years.
     
  2. ert

    ert Type 1 · Well-Known Member

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    It's still down to how much insulin you are producing. Some type 2's eventually need insulin. The c-peptide you quoted is above the normal range for the units that match its magnitude. Mine was less than 0.2 ng/ml on diagnosis. Insulin resistance can be measured using the HOMA formula.
     
  3. HigherStrength

    HigherStrength Type 1.5 · BANNED

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  4. ert

    ert Type 1 · Well-Known Member

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    He called it LADA? It's not a medical term used by specialists. It's type 1 diabetes. LADA is a term thrown around on this site. You will get diagnostic tests run by the NHS specialists you have been referred to. I hope you get a clear diagnosis soon.
     
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  5. HigherStrength

    HigherStrength Type 1.5 · BANNED

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  6. ert

    ert Type 1 · Well-Known Member

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  7. HigherStrength

    HigherStrength Type 1.5 · BANNED

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    His exact words:

    "your history is consistent with you having late onset autoimmune diabetes or LADA a slow onset form of type 1 diabetes. If this
    is the case then you would currently be insulin deficient and this would explain your recent weight loss,
    difficulty in building muscle bulk and high glucose and high cholesterol levels."
     
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  8. ert

    ert Type 1 · Well-Known Member

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    The evidence is in the antibody test results and c-peptide less than 0.2 ng/ml after 5 years. Aren't these questions you should be putting to your specialists when the time comes? Aren't you looking for answers?
     
  9. HigherStrength

    HigherStrength Type 1.5 · BANNED

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    I did have GADA test also, which was negative, but we can also look at this conclusion which shows varying degrees and differences with regard to GADA.


    Results: Insulin resistance was higher in the GADA- group, followed by patients with low GADA titers. BMI and the frequency of arterial hypertension, elevated triglycerides and reduced HDL cholesterol were lower in the high GADA+ group, with no difference between the GADA- or low GADA+ groups. The high GADA+ group showed a greater reduction and lower levels of C-peptide and required insulin earlier during follow-up. Patients with GADA titers > 20 U/ml and insulinized early presented no significant variation in C-peptide levels, had better glycemic control and required a lower insulin dose than patients who were insulinized later.

    Conclusion: We agree that patients with LADA should be differentiated on the basis of GADA titers and that patients with GADA titers > 20 U/ml benefit from early insulinization.
     
  10. ert

    ert Type 1 · Well-Known Member

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    Type 1 can be caused by viruses and there are no antibodies present in that case also. It's inclusive. You need to ask your specialist about your c-peptide results. That's more of an indicator.
     
  11. HigherStrength

    HigherStrength Type 1.5 · BANNED

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    Of course I am looking for answers, however, why should I consider your opinion when you stated LADA is some sort of myth - "a term only thrown around on this site?", Thank you for your time though.
     
  12. ert

    ert Type 1 · Well-Known Member

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    Latent Autoimmune Diabetes in Adults is supported by positive antibody tests such as GAD is what was stated. Why are you calling this a myth?
     
  13. HigherStrength

    HigherStrength Type 1.5 · BANNED

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    Are you some sort of diabetes elitist? It is you who posted the statement below - lol. Have to admit that error.

    "He called it LADA? It's not a medical term used by specialists. It's type 1 diabetes. LADA is a term thrown around on this site. You will get diagnostic tests run by the NHS specialists you have been referred to. I hope you get a clear diagnosis soon"
     
    #33 HigherStrength, Oct 9, 2021 at 8:17 PM
    Last edited: Oct 9, 2021
  14. HigherStrength

    HigherStrength Type 1.5 · BANNED

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    I am saying that based on below, one with LADA can have negative OR positive antibodies:

    https://pubmed.ncbi.nlm.nih.gov/18438542/

    "Compared to GADA-negative diabetics, patients with LADA present a higher prevalence of other autoantibodies (anti-TPO, anti-21-hydroxylase and antibodies associated with celiac disease) and a higher frequency of genotypes and haplotypes indicating a risk for DM 1. Patients with high GADA titers may benefit from early insulinization and avoiding the use of sulfonylureas, delaying beta-cell failure. In contrast, patients with low GADA titers do not seem to have any disadvantage when managed as type 2 diabetic patients (GADA negative)".
     
  15. ert

    ert Type 1 · Well-Known Member

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    I'm sorry you don't understand the article. LADA has higher levels (or tiers) or lower levels (or tiers) of antibodies. They aren't antibody negative. Type 1 can be antibody negative.
     
  16. EllieM

    EllieM Type 1 · Moderator
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    Maybe I'm misunderstanding, but does that put you in a LADA group who won't be harmed by being treated with gliclazide?

    Look, I am sure this must be very frustrating, but sometimes you have to work within the system to get what you want. So some possible actions include

    1) wait (several months?) for your GP to get you that consultant appointment. In the meantime keep an eye on your bloods and your ketones (you can buy urine testing strips which are much cheaper than blood testing ones) and if your ketones go high you can ring 111 and/or go to hospital.
    2) change GP and see if the new one will give you a more timely appointment. (If the hold up is with the hospital this may not help). Likewise keep monitoring.
    3) Take the insulin that the GP can get you and wait for the appointment. Though tresiba is very long acting, as far as I know (I'm not a doctor) you'd still have to have it once a day, so a 24 hour basal wouldn't be much worse. An advantage of this is that the GP would have to prescribe you blood testing strips.
    4) Try a higher carb diet and see if that pushes you over into ketosis and a hospital trip. (I really hesitate to suggest this, and am definitely not recommending it, though in theory, if you are slow onset T1, this is just speeding up the inevitable if you don't go on insulin).

    5) Take the gliclazide. If it doesn't work then that puts pressure on the system to give you insulin/get you to a consultant. But if the GP is already willing to give you insulin (just not your preference) and you are 100% certain you are a T1 variant then there is not much point in doing this rather than taking the insulin.

    6) Complain about your GP, though I suspect he/she may just be following NHS guidelines. This might help if the consultant delay is with him and not the hospital, though in my experience (3 countries, including UK albeit 20 years ago) hospital appointments can be slow in coming unless you are on death's door.

    7) And for completeness, pay privately to get the insulin you want. (Though I completely appreciate why you don't want to do this.)

    As for the death's door thing. Yes, DKA will definitely put you there but you really don't want to experience this.

    Good luck
     
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  17. HigherStrength

    HigherStrength Type 1.5 · BANNED

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    Thank you for your detailed reply. Much appreciated. I have made some responses in bold below.

     
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  18. HigherStrength

    HigherStrength Type 1.5 · BANNED

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    Thank you for your help, but it seems you are incorrect.

    https://www.diabetes.co.uk/gad-antibody

    What will the GAD test results show?
    Presence of the GAD antibodies is observed in 75% of people with type 1 diabetes at diagnosis.

    If the test shows GAD antibodies are present, this indicates that the patient has type 1 diabetes. If no GAD antibodies are present, however, the test cannot be conclusive in saying that the patient does not have type 1 diabetes.
     
  19. Daibell

    Daibell LADA · Master

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    Hi. I've been following this discussion with interest as I've been down a similar route. LADA is a term used by NICE in some of it's documents although many GPs may not recognise it, DUK never recognised it when I was a member and so on. Many sadly stick to the view that T1 can only be caused by autoimmunity and that will be mainly in childhood. When I was finally referred to an NHS endo last year he was one of the many favouring GAD as the decisive factor. When he lost my C-Peptide test result his nurse told me as my GAD was negative I was not T1. I complained and he gave me another C-Peptide test but a urine one this time rather than bloods. The result was higher than the T1 top level but we had a very interesting 1/2 hour chat on the phone but no change to my T2 diagnosis. As my wife has just had a kidney transplant I'm aware how variable Creatinine levels are day to day for everyone (confirmed by the transplant consultants) yet the Cr/C-Peptide ratio is used in the urine test and by my Endo. Can it be relied on - I don't think so? My BS behaviour is as seriously bad as a T1 and I'm slim with low visceral fat so I'm highly suspicious of the way LADA is currently being diagnosed when older. BTW why do you want a long-lasting Basal? My endo mentioned it as an option to my Levemir (which lasts only 8 hours) but I realise by splitting my Levemir it gives me far better control by having a non 50:50 split. I wouldn't want a Basal that lasted more than day. My Libre 2 has been useful in confirming the best ratios to use and I also tweak a bit each day.
     
    • Informative Informative x 1
  20. Jaylee

    Jaylee Type 1 · Moderator
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    Hi,

    I'm sorry to read your struggle getting the appropriate treatment for you to manage your BGs.
    My personal experience. The way to go is a letter from an endo to your GP to get the thumbs up on a script?
    I had a similar issue earlier this year being prescribed a sensor, despite my GP being all for it.
    I eventually was CC'd into correspondence instructing my GP to do just that.
    I still have a fair way to go regarding convincing the endo on a basal change.

    I'm going to be upfront & ask you a question. Have you ever used steroids.?
    Particularly the "performance enhancing" type.

    Keep pushing, & best wishes.
     
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