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 »

Curious

Discussion in 'Type 1.5/LADA Diabetes' started by lcarter, Sep 13, 2021.

  1. lcarter

    lcarter Type 2 · Well-Known Member

    Messages:
    487
    Likes Received:
    369
    Trophy Points:
    123
    Hi!

    I was diagnosed 12 years ago as a type 1 and put on insulin. Levels were through the roof and I became insulin resistant. One bright doctor decided to do a c peptide test and he found that 12 years on, I was still producing what he said was ‘alot of my own insulin’ and mentioned the figure of 2000.

    So then they backtracked, and I’m a type 2. One year later I’m still struggling with my levels. I’m off insulin and put on Jardiance and Metformin.

    That doesn’t work, so straight back on insulin.

    Then we come off the insulin to try a new drug: Trulicity.

    So they tried me on Trulicity, and put me on too high a dose and I was very ill. I had to come off due to being so poorly.

    Back to insulin, Metformin and Jardiance.

    I asked to try Trulicity again, but on the lowest dose.

    I stopped the insulin, and so far the side effects have been bearable and I’m losing weight. (Probably because I barely eat as a side effect)

    Third injection of Trulicity was like unleashing hell on my body; I’ve not got out of bed for three days, only to dash for the loo.

    Most of the time I know to seek medical advice, but I’ll be honest, they’re not sure what to do.

    It’s this it it’s insulin, unless I go low carb. (I have intolerances to most meat and fat, so this doesn’t suit me) but I guess I could lower carbs without going LOW.

    So that’s my history in a nutshell.

    I have been reading about LADA, and I’ve heard that the test to diagnose it is something I can’t have due to being diagnosed so long ago. (The endo said my body wouldn’t show the anti bodies or whatever it is, it should have been done within the first five years)

    I’m tired of being tired.

    No one has any more suggestions, and I’m feeling fed up.

    Any advice is welcome. Thank you for reading.
     
    • Hug Hug x 7
  2. EllieM

    EllieM Type 1 · Moderator
    Staff Member

    Messages:
    4,713
    Likes Received:
    2,359
    Trophy Points:
    198
    I'm not a doctor, but I think the high (?) cpeptide also rules out LADA, because after 5 years your insulin production would be low not high.

    Do you want/need to lose weight? If so, low carbing would probably help, because weight gain is a side effect of high bgs and excess insulin. There is a vegetarian subforum to the low carb forums here so it may be worth a look.

    What are your levels like on the current regime? High bgs would cause tiredness.

    My understanding is that weight loss (if appropriate), low carb and exercise all help with insulin resistance. And there are a whole raft of new or newish T2 drugs which might be appropriate for you, depending on what your doctor says.

    Good luck.
     
    • Like Like x 3
    • Agree Agree x 1
  3. Ronancastled

    Ronancastled Type 2 · Well-Known Member

    Messages:
    808
    Likes Received:
    483
    Trophy Points:
    123
    My God you've been through the ringer.
    Google throws up this range for fasting insulin
    You'd need to know what units that 2000 was in before you could make any judgement.

    Only thing I've read about Ozempic/Trulicity type injectables is that the discomfort does ease over time & the effects are well worth it.
    No solace there though while you're going through the worst of it.
     
    • Like Like x 2
  4. rosemaree

    rosemaree LADA · Well-Known Member

    Messages:
    146
    Likes Received:
    37
    Trophy Points:
    68
    Hey @lcarter,

    Sorry to hear you are having a tough time. I have just had my diagnosis changed to LADA from type 2. I have always felt like I had issues with sugar, and for the last 13 years used to actually tell my doctors and family, no one took me seriously until I bought my own meter and got at 18 mmol reading! Meds also made me feel awful, and I'm realising now some did not actually do anything for my sugar levels.

    You might still show antibodies on a test. I was tested two years after a formal diagnosis, but many years after symptoms and concerns about my blood sugar and I was strongly positive for antibodies. Plus there are other things that can cause cell death, it's not always the antibodies they test for!

    Was your c- peptide fasting?

    Mine was normal/low not fasting, with blood sugar in the 20's. I initially thought I am still making insulin so was confused, but doctor pointed out that I was not making near enough. A healthy pancreas can overproduce quite a large amount and mine was maxing at normal/low.

    Have you tried a plant based diet? I also don't take to meats and fats much :bag:

    Sorry I don't really have advice, hope you start feeling better soon :cat:
     
    • Like Like x 1
  5. ickihun

    ickihun Type 2 · Master

    Messages:
    13,647
    Likes Received:
    18,489
    Trophy Points:
    298
    If you have had a loose tummy for a long while you will be low on electrolytes, B12, magnesium and possibly iron. All of which make you tired. When was your last full blood tests?
    Myself I used insulin to reduce my huge insulin resistance before and after my bariatric operation. I needed bariatric help due to 400units of insulin (made up from triple dose Toujeo300 and novarapid) giving me unsatisfied hunger and 23st with the ailments that came with it.
    How much insulin were you Injecting when your c-peptide came back as 2000? Mine was 793 then 1002. I produced more insulin from Carbs. FOR ME Carb = insulin. Without my liver proceeding it correctly and it kicked out glucose into my blood.
    However I have been testing my reaction to Carbs lately and I'm clearing a high bg on eating.. after 2hr testing. I'm delighted. I seemed to be no longer insulin resistant but my overweight status is due to lack of being able to exercise (back and neck problem) and an underactive thyroid with additional meds which give me weight gain as a side effect. I'm at the best status with my diabetes that I've ever been. I'm only taking 1000mg metformin and no insulins.
    So because I too have had diabetes a long time it was questionable whether I had a different type of diabetes too.
    My team are happy to confirm my status as type 2 now.
    I had symptoms when I was 6yrs old and now I'm 50yrs old. I naturally was drawn to high protein eating with periods of carb cravings. Hence I was overweight by the time I was 7yrs old.
    My teenage boy has now gone on high protein lower Carbs and he no longer gets carb cravings and is slimming down.
    I'd suggest you try fish and seafood if you like it as your main protein intake. Even yogarts can be helpful if not filled with syrup and fruit juice. Options of low fat cheeses etc. are in most supermarkets in the UK. I ate a low fat burger for dinner last night. It was a bit over seasoned with black pepper but good for my bgs all the same.
    I'm glad you've posted here. You will get some excellent advice to try and see what works for you.
    I feel positive for you. I know you can get your diabetes in a better place, for sure.
     
    • Like Like x 2
  6. ickihun

    ickihun Type 2 · Master

    Messages:
    13,647
    Likes Received:
    18,489
    Trophy Points:
    298
    I've just realised my both c-peptides were none fasting. So I guess my readings are ot too.
    Remind me again... Is c-peptide needed to be fasting result because food intake just before makes it a higher result right?

    Neither wonder I was tested again but once again it wasn't a fasting blood test.
    I will insist on a fasting one next time.
    Mind you I feel fine not Injecting so far. I might need to test for ketones but I've ran out of tests. I might be getting rebound from Carbs which is common with Roux-en-y bariatric operations but only my blood tests will answer those questions.
     
  7. AndBreathe

    AndBreathe I reversed my Type 2 · Expert
    Retired Moderator

    Messages:
    9,804
    Likes Received:
    15,822
    Trophy Points:
    178
    @lcarter - life just keeps on giving for you at the moment.

    If your team are not getting a handle on things to help you find a sustained improvement, have you considered asking for a second opinion? You are entitled to ask for such a thing on the NHS, so it doesn't necessarily have to be private.

    If you want to do that, I would strongly suggest you do your homework and decide whom you would like to see. They do not have to be from your own area, although I think going out of England (I assume you live in England) to Scotland, Ireland or Wales could be a bit trickier.

    Your GP can make a referral, and they can make a named referral for you, then you don't go into the clinic "bucket" for the lottery of clinical assessment.

    When I did this I spoke with a friend of mine who was a hospital specialist DSN, and asked if she had endo challenges whom she would see. I then did more homework on the chap then saw him. At the time, my GP was very happy to make both an NHS referral, and I saw him privately too, because that was going to be quicker.

    I really do feel for you. It's horrid feeling horrid and it seems never ending for you. I do hope you find some respite soon.
     
    • Like Like x 2
    • Agree Agree x 1
  8. jonathan183

    jonathan183 Type 1 · Well-Known Member

    Messages:
    118
    Likes Received:
    45
    Trophy Points:
    68
    you might find this helps ;) table 1
     
    • Winner Winner x 1
  9. Daibell

    Daibell LADA · Master

    Messages:
    12,226
    Likes Received:
    7,280
    Trophy Points:
    298
    Hi. Reducing the carbs in your diet will be very important. In what way are you intolerant of meat and fat? Having proteins and fats of some kind is very important with a low carb diet. The proteins can be plant-based and there is a wide range of fats to potentially choose from to avoid the problem ones?
     
    • Like Like x 1
    • Agree Agree x 1
  10. lcarter

    lcarter Type 2 · Well-Known Member

    Messages:
    487
    Likes Received:
    369
    Trophy Points:
    123
    Hi everyone, so I’ve had a chat with my DN again today as I had bad side effects these past few days from my 3rd Trulicity injection. I’ve eaten for the first time yesterday, but having to eat carbs as apparently I can’t low carb on the empagflozin? :eye roll:

    The DN said I’ll probably have to go back on insulin in addition to the Trulicity, Metformin and empagflozin.

    I react to red meat and any kind of high fat meals with IBS and for that reason I avoid low carb. I just don’t want to be on all of this medication.

    I’m not a naturally active person but I feel like that might be the solution?
     
    • Hug Hug x 1
  11. HSSS

    HSSS Type 2 · Expert

    Messages:
    5,612
    Likes Received:
    2,768
    Trophy Points:
    198
    Any of the sglt-2 flozins are higher risk for euglycemic dka when combined with low carb. That said if you decide to come off that type of medication low carb is well known for improvement in ibs in many cases. It certainly helped my son’s. Have you ever tried low carb and the meat/fat intake simultaneously? It might be the presence of both together that is the issue rather than directly the meats/fats. And as said above there are many different sources of protein and fat and not all produce the same effects. You are dealing with many side effects from medication now. Is dealing with possible side effects from foods going to be worse or better? Is it worth a gentle and gradual trial to see what happens? Perhaps along with a bit more activity.
     
    • Like Like x 2
  12. ert

    ert Type 1 · Well-Known Member

    Messages:
    2,362
    Likes Received:
    2,929
    Trophy Points:
    198
    I'm sorry you are having a tough time of it. I myself would keep trying to find low carbs that I can tolerate as that is the easiest path rather than taking more and more medication.
     
    • Like Like x 1
  13. ert

    ert Type 1 · Well-Known Member

    Messages:
    2,362
    Likes Received:
    2,929
    Trophy Points:
    198
    I'm not sure the details of your diagnosis but the post by @lcarter is correct in that type 1 (or LADA) is diagnosed within 5 years where the patient will require insulin to manage their blood sugars due to not producing enough insulin (low c-peptide below the normal range. This rapid deterioration is due to an autoimmune or virus attack etc). Here is the link of the c-peptide and time cut-offs:
    https://www.exeterlaboratory.com/test/c-peptide-plasma/
    They quote the c-peptide here as antibodies that can exist due to other autoimmune conditions or exist in the general population without causing diabetes. Viruses can also cause beta-cell destruction which will show up on a c-peptide test and the patient will not have antibodies.
     
    • Like Like x 1
    #13 ert, Sep 14, 2021 at 3:12 PM
    Last edited: Sep 14, 2021
  14. lessci

    lessci Type 2 · Well-Known Member

    Messages:
    855
    Likes Received:
    708
    Trophy Points:
    133
    Strange my DN is happy for me to low carb on Dapagliflozin, just not keto (less than 20g) but they can only work with the information they're given. My ibs has actually improved going low(er)carb, but I know everyone has different triggers, and you know what works for you. They tried me on one of the injectables years ago (can't remember which one,but 1 injection a week) didn't work for me, the drug just sat in a lump under my skin (for months). I hope you get it sorted soon
     
    • Like Like x 1
  15. lcarter

    lcarter Type 2 · Well-Known Member

    Messages:
    487
    Likes Received:
    369
    Trophy Points:
    123
    Thanks. How low carb did you go?
     
  16. lcarter

    lcarter Type 2 · Well-Known Member

    Messages:
    487
    Likes Received:
    369
    Trophy Points:
    123
    I think low carb is looking like a strong contender for helping me out, combined with exercise. (More walking) I’m just wondering if it will work without going fully keto, you know? I might give that a go. The medications are driving me crazy
     
  17. HSSS

    HSSS Type 2 · Expert

    Messages:
    5,612
    Likes Received:
    2,768
    Trophy Points:
    198
    Every step in the right direction helps.
     
    • Like Like x 1
  18. Daibell

    Daibell LADA · Master

    Messages:
    12,226
    Likes Received:
    7,280
    Trophy Points:
    298
    Hi again. It may be you could stop the Empagflozin after discussion with the GP. Having a lower carb diet may be just as important in controlling BS as the tablet? Do look at other proteins than red meat; there are many to choose from. Also going low carb may also make you able to stop the Trulicity. That injectable is normally used if a patient is overweight and has high BS. I can't imagine it will be helping with your IBS. I would try to reduce carbs (not full keto) to get any excess weight into a good range and review what meds you need to remain on. I think you need to focus on what each drug is doing and it's benefits and side effects and whether each one is helping or giving problems.
     
    • Like Like x 3
  19. lcarter

    lcarter Type 2 · Well-Known Member

    Messages:
    487
    Likes Received:
    369
    Trophy Points:
    123
    Thank you, this makes a lot of sense!
     
  20. rosemaree

    rosemaree LADA · Well-Known Member

    Messages:
    146
    Likes Received:
    37
    Trophy Points:
    68
    Thanks, this is interesting. I don't really see the "cut off" times you talk about, rather just suggestions. I was put on insulin just less than 2 years after my official diagnosis, but that is completely dependent on the doctor - I struggled without it for many months. I am still trying to figure out what made me struggle before that, but I think it is all a lot more complex than we understand!
     
    • Like Like x 1
  • 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