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 »

Help with LADA/NHS

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

  1. HigherStrength

    HigherStrength Type 1.5 · BANNED

    Messages:
    47
    Likes Received:
    9
    Trophy Points:
    28
    Hello,

    I would like to ask for some advice and thank you in advance.

    History outline:

    Diagnosed in 2016 as a T2 based on high HBA1C although I was not overweight. Went on Keto/LCHF, took up strength training and maintained average HBA1C of 42mmol and excellent BG control. All without any medication.

    However, late 2020, my BG started increasing to average 10mmol, pretty much all day, despite my low/carb regular strength training. Went to GP to carry out another HBA1C which was approx 95. They tested for Ketones - none. GP was confused and suggested Gliclizide. I wanted to research more, so I delayed medication.

    Went to private Endocrinologist and Diabetes specialist who suspected LADA which required further testing. He suggested I begin a small 40mg of Gliclizide for a month to see if that helped, awaiting insulin and C-peptide test results. Gliclizide didn't help and gave me headaches, and after further research I decided to stop taking them as it turns out oral agents are incorrect treatment for LADA and could make things deteriorate faster as they deplete Beta cells. Not so good.

    6 weeks later my private tests showed insulin and C-peptide levels were relatively low (6 and 2.2 respectively) suggesting that I am insulin deficient. Private GP offered increase in Gliclizide or option to begin insulin. I decided insulin, specifically on Tresiba, low dose 4units before bedtime, however, I wanted this prescribed and monitored etc via my GP/Diabetic nurse.

    Went back to GP said he could not prescribe insulin without authorisation from NHS Endo consultant and has referred me. However, it has been over a month and have not heard anything despite chasing GP a few times. GP says it "will take a very long time to get a referral" and "advises me to take Gliclizide", which I have said I will not be taking as they deteriorate whatever insulin production I still have.

    In the meantime, the NHS diabetic nurse has instructed me on how to take insulin and given me a sharps bin - yay?, but no word back from NHS Endo consultant (whom I have never met, nor spoken with) and I am riding BG levels from 10-14mmol. GP is not helpful really.

    All I would like is to start insulin treatment asap. Any advice on how to get things moving without me ending up in hospital first would be greatly appreciated!!

    Thank you for taking the time to read this.

    James

    London, England.
     
    • Hug Hug x 3
    • Like Like x 1
  2. DEBBIESCOTT

    DEBBIESCOTT Type 2 · Well-Known Member

    Messages:
    251
    Likes Received:
    443
    Trophy Points:
    123
    Can’t your diabetes nurse help you, mine has spoken to 2 consultants on my behalf this summer and both told her to just put me on insulin so she offered me it. Asked her if I really needed it and she said no, so I said no thanks.
    Sure other people will be more helpful.
    Good luck, hope you get sorted soon
     
    • Like Like x 1
  3. HigherStrength

    HigherStrength Type 1.5 · BANNED

    Messages:
    47
    Likes Received:
    9
    Trophy Points:
    28

    Hi. Thank you for you reply. Nurse says she cannot prescribe because the Tresiba is on a CCG amber list. GP will not authorise until Endo consultant has authorised.
     
  4. EllieM

    EllieM Type 1 · Moderator
    Staff Member

    Messages:
    4,769
    Likes Received:
    2,371
    Trophy Points:
    198
    Would your DN monitor you if you got insulin from the private GP?
     
    • Like Like x 1
  5. HigherStrength

    HigherStrength Type 1.5 · BANNED

    Messages:
    47
    Likes Received:
    9
    Trophy Points:
    28
    Yes, I am sure she would. However, I pay the NHS to cover this for me, so I wish to avoid paying for the same thing twice. I had to go privately to get a diagnosis as the NHS won't perform the required tests to get a correct diagnosis, which is concerning enough and private has cost around £1000 so far. Not to mention the thousands of test strips that I have laid out for over the past 5 years too.
     
    • Hug Hug x 2
  6. ert

    ert Type 1 · Well-Known Member

    Messages:
    2,372
    Likes Received:
    2,937
    Trophy Points:
    198
    What are the units of your c-peptide test? And the normal range? For example, if nanograms per milliliter, a normal C-peptide range is 0.5 to 2.0 nanograms per milliliter. If namomoles per litre, 0.17-0.90 nanomoles per litre (nmol/L) 2.2 is above the normal range for both which support type 2.
     
    • Like Like x 1
    #6 ert, Oct 9, 2021 at 12:42 PM
    Last edited: Oct 9, 2021
  7. HigherStrength

    HigherStrength Type 1.5 · BANNED

    Messages:
    47
    Likes Received:
    9
    Trophy Points:
    28
    Unfortunately, I would have to go back to Dr David Cavan, who did the testing. His report only stated the paragraph above without units.

    He doubted it was T2 or MODY and stated; "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 (which was confirmed via subsequent tests) and this would explain your recent weight loss, difficulty in building muscle bulk and high glucose and high cholesterol levels".

    I am active, been bodybuilding/powerlifting on Keto/Carnivore based lifestyle for over 5 years consistently, 48 years old, but muscular, low bodyfat etc, so I do not fit the T2 profile at all. Plus, when initially diagnosed as T2 in 2016, I put it into "remission" within a few months and had incredible control. Nothing had changed with regard to my lifestyle so that my BG would increase and by so much. I also find it impossible to put on mass, despite being in a caloric surplus for years. I do not suffer any diabetes symptoms or complications either, so I guess all this combined has moved from T2 to T1.5 diagnosis.
     
  8. Fenn

    Fenn Type 1.5 · Well-Known Member

    Messages:
    951
    Likes Received:
    1,202
    Trophy Points:
    178
    Hi, it’s a shame you are having to fight to see an endo, did your private doctor diagnose you as T1? If not, why not? If so then surely your GP would have no choice other than refer you to endo? As you’ve had a diagnosis from a doctor, I cannot see how they could refuse under those circumstances.

    I have no idea how I ended up seeing a consultant endo, I didn’t ask to see one. Even before anyone mentioned alternate diagnosis to my T2 I was pressured to have insulin on NHS. I don’t understand why they are resisting. I do think your cpep was low compared to what I’ve seen others mention, even if it isn’t technically within the bracket, it’s close. Did you have any other tests like GAD?

    My cpep was 0.05 but no other tests suggested T1, I fit the T2 profile pretty well, always did.
     
    • Like Like x 1
  9. HigherStrength

    HigherStrength Type 1.5 · BANNED

    Messages:
    47
    Likes Received:
    9
    Trophy Points:
    28
    Private Dr David Cavan diagnosed LADA (1.5), who is one of the UK's top Diabetes Endo's. My GP has simply "discussed" my case with the NHS endo and came back as "poorly controlled T2" - I didn't know whether to laugh or cry. But I am certain I am not T2. I have a second cousin with T1.

    My GP won't take my Private Endo conclusion so I have now been "referred to NHS endo, so that he will or will not authorise insulin degludec. I am hoping he could do this based on Provate endo diagnosis and simply fire an email to my GP. But in the meantime, the GP wants me to take Glicliczide - again - but there is no way I am doing that as it is counter-productive and harmful - I have sent my GP the studies showing that, but takes no notice. Welcome to the NHS in 2021 -for the "greater good". Stall, deflect, offer wrong treatments, biosimilars, save money, which is our money.
     
  10. KK123

    KK123 Type 1 · Well-Known Member

    Messages:
    3,921
    Likes Received:
    2,476
    Trophy Points:
    198
    Hi there, although we are different as are all of us I thought I'd share my story as it may help you. I was 52 when after a routine 'well woman' check, they told me I had 'pre diabetes', my hb1ac was I think something like 6.5%. They started to talk about 'lifestyle changes' but I was slim/non smoker/teetotal/ran every day so as fit as a fiddle and my diet was 'good' in that I did not eat 'rubbish' as they put it, I only say this for context as it's the criteria they seem to use. I did eat carbs but mostly from veg/beans/some fruit and so on as well as (sometimes) pasta/potatoes/rice, a 'normal' diet but rarely any cakes, sweets, pastry, etc. I recall the Nurse at the time looking at me and saying, 'Well there are clearly no lifestyle changes you can make, but maybe don't eat any processed food'. I had told her after wracking my brains that I sometimes had a microwave meal at work whilst working shifts.

    Fast forward 3 years with not a single microwaved meal (!), no checks or contact in between, and I started to feel strong symptoms of diabetes. After checking my glucose myself (Mum was type 1), I was getting readings of 20 plus. At the GPs they said 'Type 2' and started to prescribe me something, to this day I don't know what but it wasn't metformin. Then the GP suddenly decided to do a ketone check and then it was panic stations. My ketones were over 4. Off to A&E, straight on a drip. The Consultants there between them said 'type 2?, no type 1?, no LADA?' as on presentation I was still thin and getting thinner, I was still very fit and in all the ways they diagnosed, I did not fit type 2 other than by virtue of age. I came out of hospital on insulin but no 'label'.

    In the following few weeks they did a C Peptide test which came back as low end of normal, the measurement was '145', no idea what units were used, and positive antibodies (GAD). They diagnosed type 1 (as they do not use the term LADA, it's all type 1).

    So, they suspect my 'pre diabetes' was actually slow onset type 1. I was on the verge of DKA 3 years later when I ended up in hospital. The 3 years between the so called pre diabetes diagnosis and the type 1 diagnosis was when I was on an even lower carb diet and still very active which I believe masked the true symptoms of type 1, up to the point when it overwhelmed me.

    I say this because it is possible that you have been slow onset type 1 for the last 5 years and because you were very low carb and very fit, you have been able to manage it. Now however, it seems you cannot. So I would say INSIST on the tests as you are doing and personally at your stage, I would up my carbs to show how high your numbers would be without your current low carb diet. If they see your levels are low teens etc, they use that data as part of their diagnosis and may go towards type 2. If (after experimenting) you see your levels rocketing even more, that too may help them in their decision. Do you have any ketone strips at all as if it does go above 12/13 test for them too. I think so many people start off and immediately go low carb, I can see why but before any proper diagnosis going low carb for a length of time can add to the confusion.

    To this day I am convinced if I had been overweight I would have been diagnosed with type 2 and NO tests would have been done. I dread to think how I would have ended up if that had been the case. I know you do not currently feel any diabetes symptoms but neither did I for those 3 years right until the very end and then it turned into an emergency.

    I hope this helps.
     
    • Like Like x 2
    • Informative Informative x 1
    #10 KK123, Oct 9, 2021 at 3:16 PM
    Last edited: Oct 11, 2021
  11. Fenn

    Fenn Type 1.5 · Well-Known Member

    Messages:
    951
    Likes Received:
    1,202
    Trophy Points:
    178
    I think I would be standing outside the GP surgery with a placard if I were you
     
    • Like Like x 1
    • Funny Funny x 1
  12. HigherStrength

    HigherStrength Type 1.5 · BANNED

    Messages:
    47
    Likes Received:
    9
    Trophy Points:
    28
    Thank you for your reply and insight.

    Thank you. ....tempting to carb up after all these years! Will get a ketone meter too...my BG has occasionally been around 13-14 recently. Ketones were checked for during a NHS nurse appointment a couple of months ago and was ok at the time. Interestingly, I did ask my GP to test my insulin levels about 3 years ago, but he said the NHS did not perform them. This GP is more interested in pushing Gliclizide and Metformin on me. :-(
     
  13. HigherStrength

    HigherStrength Type 1.5 · BANNED

    Messages:
    47
    Likes Received:
    9
    Trophy Points:
    28
    Haha! Yep, so much to protest about lately, however I may get beaten up by a troupe of London TSG - unless it's the right kind of protest. ;-)
     
  14. HigherStrength

    HigherStrength Type 1.5 · BANNED

    Messages:
    47
    Likes Received:
    9
    Trophy Points:
    28
    This is a very interesting publication: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5111528/

    "Patients with LADA who are incorrectly diagnosed with type 2 diabetes often will be started down a path of various oral treatment options, potentially delaying effective treatment. Although, as noted, LADA patients may initially respond to oral medications, they often require insulin therapy within 5 years of diagnosis. Providers may spend several months titrating oral medications, suspecting nonadherence, and enforcing further lifestyle modifications when, in actuality, these patients are in need of insulin therapy. Medications that preserve β-cell function may be useful for LADA as well, given its relatively more rapid progression of β-cell loss compared to type 2 diabetes (4). Incorrect diagnosis can delay proper treatment, exposing patients to potential adverse effects from ineffective drugs, slowing progress toward normoglycemia, and ultimately increasing the risk of long-term complications."

    and

    "In addition to insulin, other therapy options that preserve β-cell function, including dipeptidyl peptidase-4 inhibitors, glucagon-like peptide 1 receptor agonists, and thiazolidinediones, could be considered for patients with LADA. Conversely, therapy options such as sulfonylureas that increase the rate of deterioration of C-peptide secretion, further depleting insulin levels, should be avoided (1420)."
     
    • Informative Informative x 2
  15. LionChild

    LionChild LADA · Well-Known Member

    Messages:
    192
    Likes Received:
    37
    Trophy Points:
    68
     
  16. Daibell

    Daibell LADA · Master

    Messages:
    12,236
    Likes Received:
    7,284
    Trophy Points:
    298
    Hi. Your GP CAN and should prescribe insulin based on a high HBA1C as mine did. Tresiba is slightly more expensive than Levemir the preferred Basal and may need a consultant to do it. Ask/insist the GP to prescribe the Basal/Bolus regime i.e. Levemir and Novorapid. There are other insulins but these are the most popular.
     
    • Like Like x 1
  17. MrsA2

    MrsA2 Type 2 · Well-Known Member

    Messages:
    2,390
    Likes Received:
    3,110
    Trophy Points:
    198
    Or finding out their complaints procedure and following it!
     
    • Like Like x 1
  18. Fenn

    Fenn Type 1.5 · Well-Known Member

    Messages:
    951
    Likes Received:
    1,202
    Trophy Points:
    178
    Sure, that too lol
     
    • Like Like x 1
  19. HigherStrength

    HigherStrength Type 1.5 · BANNED

    Messages:
    47
    Likes Received:
    9
    Trophy Points:
    28
    Thank you, however, the degludec version seems to be the one most fitting. I know it is available on the NHS, but they try and steer to a biosimilar, or alternative which are cheaper, yet there is no long acting that can offer 48 hours in such low doses. I would have to take other insulins more often, which is what I want to avoid, so costs would pretty much six of one half a dozen of the other. I think there would be a nominal £20 difference per month overall. I know Tresiba is on an amber list on certain CCG's, but it's the treatment most suited, so I want to secure that from the start.
     
  20. ert

    ert Type 1 · Well-Known Member

    Messages:
    2,372
    Likes Received:
    2,937
    Trophy Points:
    198
    It's all down to how much insulin you are producing rather than some generic profiling. Insulin production is what a specialist you have been referred to will look at. The amount of insulin you are producing is high and supports type 2, based on the value you have given. There are thin type 2's out there that have high insulin resistance. Insulin resistance has to do with a genetic limit on the number of fat cells you can produce - when you reach your limit, you start spiking your blood sugars.
     
    #20 ert, Oct 9, 2021 at 7:40 PM
    Last edited: Oct 9, 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