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 2022 »
    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
Dismiss Notice
Find support, ask questions and share your experiences. Join the community »

Newly diagnosed with very high numbers - confused by symptoms

Discussion in 'Newly Diagnosed' started by jjne, Jun 22, 2021.

  1. Antje77

    Antje77 LADA · Moderator
    Staff Member

    Messages:
    13,662
    Likes Received:
    8,741
    Trophy Points:
    298
    Many members have been on strong medication, including insulin, and have gotten off it with lifestyle changes.
    Why would you think you can't beat diabetes naturally if you've needed stronger medication for a while?

    I get your frustration in wanting to see the 'true' numbers. I'm on insulin, and I base my doses not only on what I eat but also on my numbers (and about 20 other factors), and I do get frustrated with differences between meters. And that's not even taking in account the Freestyle Libre sensor I use which is always reading off, compared to glucose meters.

    However, all those tools together (glucose meter, Libre, hba1c tests) give me enough information to handle my diabetes quite well, keeping in mind the technology might not always be perfectly accurate.
     
    • Agree Agree x 2
  2. HSSS

    HSSS Type 2 · Expert

    Messages:
    5,891
    Likes Received:
    2,895
    Trophy Points:
    198
    You have diabetes. You will have it for life but you can (and likely will with your determination) get control and manage it; and quite possibly live a healthier life as a result of being forced to address your diet and lifestyle. The situation (I presume you mean hba1c) can change quite quickly. Probably already has begun to. The doc cannot make you take anything you don’t want to take. All they can do is make recommendations, but they shouldn’t do so unless you get significantly worse. People “beat” this after a decade or more. You really have got time and it’s already improving. It’s often said in here it’s a marathon not a sprint.
     
    • Agree Agree x 2
    • Like Like x 1
  3. Resurgam

    Resurgam Type 2 (in remission!) · Expert

    Messages:
    9,175
    Likes Received:
    5,508
    Trophy Points:
    198
    Why do you expect it to take months? Diet change can alter things in a few days.
     
    • Like Like x 1
  4. VashtiB

    VashtiB Type 2 · Moderator
    Staff Member

    Messages:
    1,758
    Likes Received:
    1,055
    Trophy Points:
    198
    Hello,

    I am sorry that you are finding it tough.

    I can really relate to the use of strips. As I've said somewhere else I used so many when I first started we should have bought shares in the company.

    Yes not seeing the drop as quickly and as much is frustrating- very frustrating. I can understand how you must be feeling- having done all the right things and your body isn't cooperating. so a virtual hug from me.

    Yes meters have their limitations and yes that causes stress. And has been mentioned before there are many things that contribute to someone's levels. For me stress was a big one for a while together with lack of sleep.

    So it can take a while for the levels to come down. I'm impressed how quickly you took in all the information and went low carb. That determination will really help. What you are combating to some extent is the body's desire for the status quo. It has got quite used to having higher levels. My way of thinking was that the body was using glucose already stored to increase my levels to get to the old normal. So I thought of it as using up stuff already stored which helped me lose weight. So long term good but short term disappointing.

    Let us know how you get on.
     
    • Winner Winner x 1
  5. jjne

    jjne · Well-Known Member

    Messages:
    76
    Likes Received:
    30
    Trophy Points:
    18
    I'm not finding it tough as such, it's just an exercise in frustration right now. I think part of my problem is the whole YouTube phenomenon of showing bg levels before and after a meal and saying "oh this banana is spiking me more than this chocolate bar". Well no, you can't say that on a sample of one when the noise floor on these devices is so high. Really you need to eat the same thing several times.

    I can't do that right now as when I do get a substantial spike it literally takes DAYS for the bg to return to equilibrium right now.

    The "spikes" with the current diet, such as they are are being lost in the noise. I guess this is a good thing as it means I'm doing at least some of it right.

    For now I'm going to stick to what I know, and not risk anything.

    BTW I realise the condition is permanent. Even if my bg ever gets down to sub-7 levels I will never be able to allow things to slide. It is what it is. "Beating" it only means controlling it, nothing more.

    I'm convinced this will take months because of the way my body is reacting. If it reaches 10 it stays at 10. If it spikes up to 15 it sits there for a couple if days before slowly coming down. Just 100g of carbs per day was doing this the other week. I was blaming the meters because I was in denial.

    I am either spectacularly insulin resistant or my pancreas is stuffed - or both. So this is a long haul. It's not ideal but there isn't much I can do about it.
     
    • Hug Hug x 3
    #65 jjne, Jul 5, 2021 at 11:00 PM
    Last edited: Jul 5, 2021
  6. Ronancastled

    Ronancastled Type 2 · Well-Known Member

    Messages:
    1,001
    Likes Received:
    629
    Trophy Points:
    173
    @jjne I do sympathise & many of us felt as hopeless as you do now at diagnosis.
    I ate a bowl of "healthy" Special K post diagnosis & saw a 13 on my meter, never thought I'd see single figures again.
    But small steps over months low carbing started to produce results, in my case it was stepped decreases not a slow linear slide.
    If you're doing the right things with diet & exercise then it will start to pay off but think months rather than days.
    If you try all that & still no progress then there a whole suite of drugs & insulin that you haven't yet considered.
     
    • Like Like x 1
  7. HSSS

    HSSS Type 2 · Expert

    Messages:
    5,891
    Likes Received:
    2,895
    Trophy Points:
    198
    So in the short term til you see better numbers or they respond more quickly play it safe. But that doesn’t have to mean boring. Have you found dietdoctor.com yet? They and loads of other sites have lots of recipes and ideas. Google whatever you fancy and add keto to the search.

    Sorry to say but 100g of carbs would send me up to 10 and more and keep me there. Lots of us need to eat significantly less than that, particularly in the early days. Some of us are a lot more insulin resistant/knackered than others. It’s what it is. It used to drive me crazy seeing higher numbers at the start getting excellent totally normal levels after 3 months on 100-150g a day when I need to be under 50 to even reach prediabetic levels and even now can’t get below that. It still does sometimes so I really do understand. Beating myself up hasn’t helped though. I do the best I can and am grateful it’s under diagnostic levels and much better than it would be without my efforts.

    Finally, if your pancreas is stuffed then a cpeptide blood test would identify it’s ability, or not, to produce insulin. That would be unusual in type 2 without decades of high levels though. If you fail to respond to low carb (really low carb/keto), levels shoot up, you loose weight without cause, symptoms get worse etc then ask for the tests for insulin production to check/rule out type 1 (aka LADA in adults when it’s slow onset) it’s not that common and I’m not hearing obvious alarm bells but sadly quite a few are initially misdiagnosed as type 2. Your dr seems proactive and might agree. Many won’t without a lot of argument though just to warn you. You mention a scan imminent. That’s not typical just because of high levels but it might help reassure you once it’s done.
     
    • Like Like x 1
    • Agree Agree x 1
  8. jjne

    jjne · Well-Known Member

    Messages:
    76
    Likes Received:
    30
    Trophy Points:
    18
    Well I discovered the joys of the DiabetesConnect app today, that thing is manna from Heaven for a stats nerd like me :D

    Rather than trying to work out patterns in my head I will put all details in there from now on which should give me a very good map of how things are progressing.
     
    • Like Like x 1
    • Winner Winner x 1
    • Optimistic Optimistic x 1
  9. ickihun

    ickihun Type 2 · Master

    Messages:
    13,682
    Likes Received:
    18,508
    Trophy Points:
    298
    Nope.
    I am proof that even one of the worst case type2 with possible wavering type1 which is still not conclusive. I can lose weight on insulin and I can add weight on insulin.

    I'd like to add.
    Meters are just a guide. I learnt way back to stick to the same meter (whichever one you chose). Same use of meter can show you the trend from the food you eat and its effect on your bgs improving etc.
    Dawn phenomenon can be blocked by a fatty protein nibble before sleep. It blocks some or most of the Liver Dumping which diabetics find a nuisance to manage.
     
    • Informative Informative x 2
  10. jjne

    jjne · Well-Known Member

    Messages:
    76
    Likes Received:
    30
    Trophy Points:
    18
    Well it's early days but the app has clarified a very consistent pattern.

    1) Last thing at night, my blood sugar consistently dips down to around 9.
    2) Dawn phenomenon is strong. In the late morning, after a 14 hour fast, blood sugar rises to 11 or 11.5.
    3) The bg does not react in any significant way to my current diet. Through the course if the day the level remains very stable, gradually dipping to about 10 in the late evening but falls another point to 9 by the end of the day.

    I now need to work out what is causing this dip. It could be response to metformin 1000mg taken with main meal, it could be my walk (that I take around 11pm) or it could be natural drop due to brain being less active (no work!).

    This is progress. I will try eating something fat/protein rich before bed tomorrow, but what would that be? A block of cheese, glass of milk, some chicken/meat carried over from main meal?

    I think if I can blunt the dawn syndrome it can push this forward a bit.
     
    • Agree Agree x 1
    • Winner Winner x 1
    • Optimistic Optimistic x 1
  11. Resurgam

    Resurgam Type 2 (in remission!) · Expert

    Messages:
    9,175
    Likes Received:
    5,508
    Trophy Points:
    198
    A glass of milk isn't exactly fat and protein - all your numbers are still high, if you can reduce carbs and blood glucose down to normal levels then things might even out a bit over the day.
     
    • Agree Agree x 1
  12. jjne

    jjne · Well-Known Member

    Messages:
    76
    Likes Received:
    30
    Trophy Points:
    18
    I can't reduce carbs any further than I already have. There is no method I know of that will reduce them to negative numbers.

    I fast for 18 hours a day, I take one meal and one smaller one in a day. I don't snack. The only carbs I eat are very low carb vegetables.

    My numbers are high, you are quite correct. But the NHS ain't gonna give me any stronger medication than I am on now until August so unless my body really turns this around in the next couple of months, they are my scores and there isn't anything more I can do about it, other than to walk out in front if a train or something.

    I even fasted for 36 hours (and had a few hypo-like symptoms) and my bg remained exactly the same, so asking me to "reduce carbs" is not the current answer in and if itself. As it stands my system sees 9-10 as equilibrium, that much is clear.
     
    #72 jjne, Jul 10, 2021 at 5:41 AM
    Last edited: Jul 10, 2021
  13. EllieM

    EllieM Type 1 · Moderator
    Staff Member

    Messages:
    6,145
    Likes Received:
    2,824
    Trophy Points:
    198
    Have you had the results back yet for the various tests they were going to do to see what kind of diabetes you have?
     
    • Like Like x 1
  14. HSSS

    HSSS Type 2 · Expert

    Messages:
    5,891
    Likes Received:
    2,895
    Trophy Points:
    198
    As you say you can’t reduce them much further. So now you maintain it and give it a little bit of time to see what effect that has. You didn’t become diabetic overnight and it won’t go away overnight either. In the meantime you keep checking how things are going. Better, worse the same? Obviously if things go downhill and numbers rise despite keto, especially quickly, get back in touch with you dr early and if possible check ketones. If they stay the same and your hba1c also hasn’t improved at the next check then you ask about c peptide and antibody tests to rule out type 1 or LADA as keto will reduce number for someone still producing adequate insulin. And if it doesn’t there’s a reason why that you need to know about. August now isn’t so far away. Hang on in there and take it a step at a time. You’re doing everything you can with the knowledge you have at the moment. Maybe the next month and next review will add to that knowledge.
     
    • Friendly Friendly x 2
    • Like Like x 1
  15. lucylocket61

    lucylocket61 Type 2 · Expert

    Messages:
    6,095
    Likes Received:
    2,648
    Trophy Points:
    178
    It can take a couple of months for your body to adapt to your new way of life. We are not machines where we can change our body responses quickly. I think you are expecting too much, too quickly.

    How many carbs are you eating a day and how are you calculating them?
     
    • Friendly Friendly x 1
  16. KennyA

    KennyA Type 2 (in remission!) · Moderator
    Staff Member

    Messages:
    668
    Likes Received:
    349
    Trophy Points:
    123
    If it's any help, I noticed that my BG reduction happened in steps - eg average in the high sixes for weeks, then suddenly low sixes/high fives, for weeks, then fives and the occasional four and so on. No progress and then sudden progress. Getting on two years of low carb now and my wakeup reading is at last starting to decline, although the "false hypo" symptoms persisting is really annoying. It takes time and even though you close the carb throttle (so things aren't getting worse) there's still a lot of change for your system to adapt to before you start to see results.
     
    • Like Like x 1
    • Agree Agree x 1
  17. jjne

    jjne · Well-Known Member

    Messages:
    76
    Likes Received:
    30
    Trophy Points:
    18
    Number of carbs is nominal. I am essentially on what amounts to a carnivore diet with a portion of low-carb veg with each main meal.

    For example tonight's meal had around 150g of broccoli. I have put this down on the app as 15g but I know its closer to 7g. Yes I could get this down to zero but I don't think that would do me much good over and above what I'm doing.

    I know this is going to take a while, I was responding really to the poster who said I should reduce carbs, which I've already done, drastically.
     
    • Useful Useful x 1
  18. Bluetit1802

    Bluetit1802 Type 2 (in remission!) · Legend

    Messages:
    25,218
    Likes Received:
    30,674
    Trophy Points:
    298
    I agree with @KennyA in that patience is needed because our BG's do tend to fall in steps, and sometimes the plateau can be a long time with a sudden drop, then repeat. It isn't linear.
     
    • Agree Agree x 2
    • Informative Informative x 1
  19. Resurgam

    Resurgam Type 2 (in remission!) · Expert

    Messages:
    9,175
    Likes Received:
    5,508
    Trophy Points:
    198
    If you know that the numbers you are putting into the app are wrong - how can you trust it to guide you?
    I was baffled by your comment that milk would be high protein and fat and an option similar to cheese or chicken - consistent and accurately counted low carb eating and drinking is a powerful tool for the control of type 2 diabetes, as long as there is nothing more complex going on.
     
    • Agree Agree x 1
  20. jjne

    jjne · Well-Known Member

    Messages:
    76
    Likes Received:
    30
    Trophy Points:
    18
    None of my main meals are spiking my bg. Numbers continue to fall very slowly from the early morning 2-3mmol/l spike through the day.

    I am experiencing the general effects of ketosis. I have ordered some strips to verify this.

    Oddly, when I've had a small amount of cheese (no carb) at 2pm though, this spikes me. Fish, salad, avocado etc do not. Flatline.

    Numbers are between 9-11 at all times, every time I check, and I can pretty much predict what they're going to be now before they come up, and/or set my watch by the result. It's actually quite amusing.

    App is predicting an a1c of 8.0. Compares to official reading equating to 12.5. And before anyone says it, yes I know still waaaay too high.

    Starting to experience similar "odd" symptoms, albeit much milder, to what I did in the first week of diet change that some put down to possible false hypo. No evidence that the bg was actually any lower at the time though. A bit of nausea, weakness etc. But this could also be "keto flu", so I dunno.
     
    • Optimistic Optimistic x 1
    #80 jjne, Jul 13, 2021 at 10:17 AM
    Last edited: Jul 13, 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