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. jjne

    jjne · Well-Known Member

    Messages:
    76
    Likes Received:
    30
    Trophy Points:
    18
    Hello everyone,

    I was diagnosed as diabetic as a result of an eye test. My vision was fluctuating and after a retinal scan I was referred to the eye hospital. I'm currently going though that process.

    I went for testing and it came back with an HBA1C of 114 :( It was so high that the GP has referred me to get a CT scan as they're not entirely sure what the cause is.

    Now here's the thing ... I never had any severe symptoms. At least, not while I wasn't aware of the problem. No undue thirst, no nausea, no drowsiness (my body clock has always been problematic, as if it works to a 22 hour day where I wake up later and later unless I keep things in rigid control, but I've been like that for decades).

    Unfortunately I'm getting the symptoms now. I bought a blood glucose meter about a month ago. My first reading was about 16, I immediately started exercising more, working up to walking about a mile or two a day now, and immediately cutting out as much carbs (and especially sugar) from my diet such that I take a maximum of 100g per day. The doctor prescribed Metformin, 500mg at first, working to 2000mg after three weeks.

    Things seemed to be working at first. My "fasting" prick-test result went down to about 11. But as I took the second Metformin tablet I suffered a crash of some sorts. I had nausea, heart palpitations overnight, a feeling of numbness - as if blood wasn't circulating right. Went to A&E at 2am one morning, stayed there for three hours, no fault found, sent home.

    I continued to feel awful for another day, so I decided to stop the Metformin for 24 hours (this was a weekend) to see what would happen. Felt much better and the blood numbers stayed low.

    I called the GP on the Monday and the consensus was that I felt better *despite*, rather than because of, coming off the tablets. Was basically ordered to go back on the Metformin, and went back to two on the Thursday.

    I haven't suffered a repeat of the problems I had since, but my blood glucose levels stopped falling and are now right back where they were -- between 12 or 15 after fasting overnight. This is despite continuing to cut the carbs, take the tablets, exercise more and I've also lost nearly a stone in six weeks.

    I'm really confused as to what I'm doing wrong. Surely there should be some positive effect to have come out of the last few weeks?

    Am I just being impatient? Should I storm into the GP's surgery and demand stronger meds, or insulin? TBH I'm at the point of despair at this stage.

    Any thoughts or advice would be greatly appreciated.
     
    • Hug Hug x 4
  2. JoKalsbeek

    JoKalsbeek I reversed my Type 2 · Expert

    Messages:
    5,003
    Likes Received:
    3,709
    Trophy Points:
    198
    Hi @jjne ,

    Sorry about your diagnosis, and the being ordered around. Metformin can have some very nasty side effects, quite a few of which you've experienced yourself. Check the leaflet, you'll be able to tick quite a few boxes. Metformin controls mainly, how much your liver dumps in the morning and after strenuous activity. It doesn't do jack about what you've ingested, so most likely the changes in your blood sugars are due to the changes you've made in your diet more than the metformin. The stuff didn't agree with me either, so that's when I started looking for alternatives and found the low carb route, which has been working fine for me. No meds in 4,5 years. Keep in mind that YOU decide what medications you take. If it makes you feel bad again, consider your options.

    Secondly, your blood sugars did drop some, but obviously not as much as you'd like. So let's check what you're currently eating. What's on your plate on a day to day basis, and what do you drink? Be as specific as possible please. Who knows, there may be ground to be gained there. https://www.diabetes.co.uk/forum/blog-entry/the-nutritional-thingy.2330/ might help some too. No need to storm into anyone's office just yet.

    That said, if you are already considerably low carb and still seeing teens when fasting and low carbing, you might want to go back to the doc and request a C-peptide and a GAD test. See how your insulin production's doing. And keep the CT scan appointment. If the doc suspects something like pancreatitis, it's worth it to see it through.

    Anyway.... If you can tell us more we might be able to help tweak your diet.
    Good luck,
    Jo
     
    • Like Like x 4
    • Friendly Friendly x 1
  3. Hertfordshiremum

    Hertfordshiremum · Well-Known Member

    Messages:
    370
    Likes Received:
    178
    Trophy Points:
    63
    Hi
    Sorry to hear you are having these problems, many of us have a rather rough ride at the beginning. I agree with Jo ask for the GAD antibody test to rule in or out late onset of type 1. I was put on metformin at the beginning and struggled for months with upset stomach, so much so that my nurse later agreed it was raising my blood sugar not helping. Is it causing any obvious problematic side effect? I was also actually type 1 so this would have been a factor too.
    I wish I had complained earlier, so I would call them back and tell them it’s not right, ask for the blood tests and there are lots of other tablets besides metformin. If I were you I would ask for a discussion with a diabetic nurse. Keep going as you are clearly on the right track.
     
    • Like Like x 3
  4. In Response

    In Response Type 1 · Well-Known Member

    Messages:
    1,543
    Likes Received:
    823
    Trophy Points:
    173
    I wonder whether the "crash" you felt was a false hypo - the symptoms sound similar.
    A hypo is a low blood sugar incident. This occurs when our blood sugars go under 4.0.
    However, our bodies are amazing pieces of machinery that can adapt. When we have undiagnosed diabetes, our blood sugars slowly rise and our bodies adapt to the higher levels. When we start treating our diabetes, our levels come down.
    Unfortunately, our bodies are not used to the lower levels and think there is something wrong - it reacts as if we are having a hypo. Whilst this is distressing at the time, it is not as bad as it feels - we need to familiarise our bodies to the lower levels so it doesn't react this way.
     
    • Agree Agree x 3
    • Like Like x 1
  5. Bluetit1802

    Bluetit1802 Type 2 (in remission!) · Legend

    Messages:
    25,218
    Likes Received:
    30,674
    Trophy Points:
    298
    Hi and welcome. You have received some good advice already. It would help us to help you if you tell us what your current diet consists of - all typical meals and drinks plus any snacks. You say you keep to 100g of cars but this may be too many for you. Whilst it is generally considered low carb it isn't usually low enough for T2s starting from the high levels you had. How are you testing? Before and after eating or just fasting or random? Are you keeping a food diary and recording your levels alongside? Are you including all ingredients in your carb count?

    Sorry there are so many questions but we would all like to help you.
     
    • Like Like x 2
    • Friendly Friendly x 1
  6. Daibell

    Daibell LADA · Master

    Messages:
    12,392
    Likes Received:
    7,351
    Trophy Points:
    298
    Hi. Being late onset T1 (LADA) is a possibility. I was around 114 mmol at diagnosis. I did feel thirsty however and went to the loo frequently. In your case there are other possibilities and the investigations may help the diagnosis. Do ensure that the GP does a GAD and C-Peptide test as these are the standard tests for T1. If you are diagnosed with T1 then the meds will need to change.
     
    • Like Like x 2
    • Informative Informative x 1
  7. jjne

    jjne · Well-Known Member

    Messages:
    76
    Likes Received:
    30
    Trophy Points:
    18
    Many thanks for the kind words, it does make me feel a lot better about my situation.

    Regarding diet, my food intake has been pretty bland these last few weeks.

    Typically only have two "meals" in a day. Nothing until about mid-day when I will usually have something like a couple of slices of toast (wholemeal), with tuna in brine (one tin over the bread) and a couple of thin slices of mature cheddar over to add a bit of flavour.

    Usually a fruit over the course of the afternoon, usually apple.

    Main meal will generally consist of fresh or frozen meat; something along the lines of a few pieces of chicken (leg/wing), with a small amount of potato and vegetables (carrot/peas/tomatoes and the like).

    Drink will be plenty of water, a few cups of tea (with a dash of semi-skimmed milk and sweetener) and a couple of cans of sugar-free soda.

    I am aware that these probably aren't ideal but the carb count comes in well under 100g generally. To be honest I'm not entirely convinced the amount I'm eating is adequate, however I don't feel hungry.

    I used to eat a lot of junk. I have cut out the takeaway food, the sweets etc etc out completely. If I do have a snack (and I don't have any at all most days) it's microwave popcorn (buttered, unsalted, no sugar) as I've been advised this is one of the better ones. Issue being it is high-carb (though I think most of it is fibre) so I don't have it often.

    I definitely take on board the subject of T1/T2 and will be pressing this subject with the doc next time I see them.

    Regarding the false hypo; sounds like a good shout but would that develop and worsen over a few days? Sorry I didn't make that part clear.

    I will of course be attending any tests the health service books.
     
    • Like Like x 1
  8. HSSS

    HSSS Type 2 · Expert

    Messages:
    5,892
    Likes Received:
    2,895
    Trophy Points:
    198
    Well if I ate what you describe I’d be both hungry and have similar bgl. Whilst it might be a lot lower carb than before diagnosis to me it’s still quite a lot. Many of us can only eat half that amount or for some even less.
    The toast would go. Fruit would only be berries and not too many at this point. I’d ditch the potatoes and be aware the peas and carrots are among the highest carb veg so be cautious with them. Popcorn is a high carb grain. I can’t see much protein or fat there either which is why you’re hungry. Eat more proteins and natural fats. Eggs and cheese are good options as snacks, but you won’t need too many when you make your meals filling enough. Have you read the nutritional blog thingy in my signature by Jo? It could really help.
     
    • Agree Agree x 4
    • Like Like x 2
  9. jjne

    jjne · Well-Known Member

    Messages:
    76
    Likes Received:
    30
    Trophy Points:
    18
    That is very interesting.

    I have clearly been approaching this all wrong. While I don't feel hungry, much of what I've cut out is precisely what this actually recommends I eat more of!

    The diet I've put myself on has certainly worked in the sense that I have lost a stack of weight. But OK the spuds and the bread goes (I was told to eat these in moderation which is precisely what I have attempted to do).

    Ironically the takeaways I've had in the past (chicken tikka madras, thai curries and the infamous chicken parmo which is a local "delicacy" in Durham) are closer to what is on that list than what I've reduced myself to (and although I am not sure about going back to that, it would seem that a curry on Saturday night is fine as long as I find an alternative to the rice).

    So essentially this is what amounts to the Atkins/Dukan diet in some respects -- cut out the carbs completely (and in particular get rid of rice, spuds and wheat) and eat meat/dairy, fatty/high protein stuff instead? (OK I know this is a flippant response but I feel like a cage has just been removed from around me). This is the stuff that I liked and that I got rid of...

    I need to look into this in a lot more detail. I was under the impression that carb-free was a miserable existence but the stuff that I need to get rid of is predominantly the filler -- replace this with healthier vegetables. I can do that.
     
    • Like Like x 3
    • Agree Agree x 3
    • Winner Winner x 3
  10. Goonergal

    Goonergal Type 2 · Master

    Messages:
    12,815
    Likes Received:
    19,627
    Trophy Points:
    298
    You got it! And the veg is optional too.

    But do bear in mind the type 1 / type 2 thing.
     
    • Like Like x 3
    • Agree Agree x 2
    • Winner Winner x 1
  11. bulkbiker

    bulkbiker Type 2 · Oracle

    Messages:
    18,969
    Likes Received:
    12,570
    Trophy Points:
    298
    Yep that will work.. on the Indian front though watch out for sweet sauces as they may have sugar in.. I tend to go for a dry chicken or lamb tikka and then add yoghurt and maybe a veg dish like aubergine.

    Some of us weirdos eat mainly meat and have quite a ot of success so if you are a meat lover try our carnivorre corner thread here

    https://www.diabetes.co.uk/forum/threads/carnivore-corner.164920/
     
    • Like Like x 2
    • Agree Agree x 1
  12. JoKalsbeek

    JoKalsbeek I reversed my Type 2 · Expert

    Messages:
    5,003
    Likes Received:
    3,709
    Trophy Points:
    198
    Yeah... Atkins is just about right, not flippant at all! Eggs with bacon and cheese and ham and whatever cold cuts you want to stack on there are back on the menu. ;) Do keep in mind that unexplained weight loss (considering the amounts of carbs you've been having and the high blood sugars that went with it...) can be an indicator for type one, though I lost 10 k out of the blue and was a T2 after all, but I'd had 20.0+ mmol/l blood sugars for quite a while. You mention that popcorn is a lot of carbs, but a lot of that's fibre. Ah, no, it's not. Sorry. :( In the USA you subtract the fibre from the total carbs, but on this side of the pond they're already been subtracted. The carbs really are exactly the carbs, which means there's a lot of them. But hey, pork scratchings are nice. ;)

    Since your type's still a bit iffy, if at any point you feel decidedly unwell, sick, confused, whatever, and you can't blame it on metformin, test, and if you're high call 111 and tell them you're diabetic with type still being decided upon. Diabetic ketoacidosis could happen, and you want help asap if it does. But having seen the amount of carbs you were having, I think a bit of dietary improvement'll make quite a difference.

    Good luck!
    Jo
     
    • Like Like x 3
    • Agree Agree x 3
  13. HSSS

    HSSS Type 2 · Expert

    Messages:
    5,892
    Likes Received:
    2,895
    Trophy Points:
    198
    Whilst a lot of type 1 or LADA are initially misdiagnosed type 2, and it is always worth bearing in mind if treatment that should work doesn’t, is there a reason why type 1 is being specifically mentioned here?

    A fair number of type 2 start with numbers over 100 and as a fairly high number of carbs are still being consumed and a drop has been seen even if it is as yet not yet back to desirable levels and weight loss makes sense when you consider the change in diet and increase in exercise is this really so out of the norm for a type 2 experience?

    ETA: I’m a little concerned how quickly this is regularly getting thrown into conversation (not just this one but across the forum) as a real possibility/likelihood to newly diagnosed right at the start and before any alarm bells have been sounded. A mention in passing with sensible caveats I agree with. A focus making people instantly doubt their diagnosis might not be helpful however
     
    • Agree Agree x 3
    • Like Like x 1
    #13 HSSS, Jun 22, 2021 at 8:17 PM
    Last edited: Jun 22, 2021
  14. JoKalsbeek

    JoKalsbeek I reversed my Type 2 · Expert

    Messages:
    5,003
    Likes Received:
    3,709
    Trophy Points:
    198
    Speaking for myself, there was mention of a diet change and that it didn't help numbers. Considering later posts stating what the new diet consisted of though... I'm leaning more to T2. But better safe than sorry.
     
    • Like Like x 3
  15. HSSS

    HSSS Type 2 · Expert

    Messages:
    5,892
    Likes Received:
    2,895
    Trophy Points:
    198
    Always.

    I’m just worried too much doubt too soon - before we know if there’s cause - might scare some newly diagnosed even more than they are already. I’m sure I’ve done it too at some point but I’m trying to ask the relevant questions first and wait for the details of what the new diet is for example before I jump there quite so quickly as I might have in the past.
     
    • Like Like x 2
    • Agree Agree x 1
    • Useful Useful x 1
  16. jjne

    jjne · Well-Known Member

    Messages:
    76
    Likes Received:
    30
    Trophy Points:
    18
    Don't worry, I'm keeping an open mind regarding T1/T2, and I'm not unduly worried either way, it's not as if I can do much about it in any case, it is what it is and I will be keeping an eye on my situation as meticulously as I can.

    I have, from today started to try to reduce carbs to nil, and will be doing an Asda shop in the next couple of days. I have a farm shop fairly nearby as well so I will be stocking up on meat products at the weekend :) spuds, rice and bread all out, popcorn out, I'll be getting some low-carb veggies in and swapping diet as much as possible. I'm sure it'll be a bit rocky at first but I'm determined to sort this thing out, and the ability to eat good quantities of meat makes this process so much easier. Money isn't an issue so if the answer is I spend twice as much on food then do be it.

    I'd like to thank everyone for their wisdom today and hopefully this is the start of my fightback.
     
    • Winner Winner x 5
    • Like Like x 1
  17. HSSS

    HSSS Type 2 · Expert

    Messages:
    5,892
    Likes Received:
    2,895
    Trophy Points:
    198
    Zero carbs is pretty close to impossible for the vast majority of people. Unless you mean under 50g as might as well be nil in comparison to normal. And don’t forget the old takeaways etc weren’t cheap either so the difference might not be as bad as you think.
     
    • Like Like x 1
  18. jjne

    jjne · Well-Known Member

    Messages:
    76
    Likes Received:
    30
    Trophy Points:
    18
    Indeed re the takeaways. Mind it has to be said that I had stopped eating them at the start of lockdown last year and gave had only two since. However, the ease with which you can buy boxes of chocolate bars and the like was probably responsible for the position I find myself in, thinking back my sugar intake over the last year was an absolute disgrace, largely due to boredom sat in the house all day.

    As such I am hoping that throttling the carbs to the bone should yield results. I just hope I haven't broken too much in the meantime.
     
    • Hug Hug x 3
    • Informative Informative x 1
  19. Kimble73

    Kimble73 Type 2 · Member

    Messages:
    21
    Likes Received:
    19
    Trophy Points:
    23
    Try eating brown rice when you feel like having it, and portion control, I was taught in the diabetes classes, half your plate should be healthy vegetables, and one part meat( chicken, pork, steak) be the size of the top of your fist. And one part healthy fats, replace your potatoe with mashed cauliflower, or sweet potatoe, with a bit of butter and bacon on top. Also limit you salt. Drink water it keeps your kidneys healthy, tea with a little Splenda( artificial sugar, and low fat milk 1% or skim, coffee but be careful what you put in it. I am from Canada and every country is different but I lost weight and reversed my diabetes type 2, yes I do cheat from time to time, this journey your on is going to be complex, until you find what works for you, do you go for A1c’s that’s were you get a blood test every 3 months to see your average over 3 months. Did your doctor tell you that it’s type 2 ? You really need to know if it’s Type 1 or Type 2 because if it’s Type1 it’s a different treatment, you will need insulin. Have you talked on the phone with a Diabetic teacher, your hospital should have this available for you.
     
    • Like Like x 1
  20. HSSS

    HSSS Type 2 · Expert

    Messages:
    5,892
    Likes Received:
    2,895
    Trophy Points:
    198
    Cutting the carbs you did was obviously enough for you and your diabetes, but some of that advice wasn’t quite accurate. Brown rice is still carbs and that will raise your bgl. Splenda is mixed with maltodextrin which also raises bgl. Sweet potatoes have almost as many carbs as white ones. Limiting salt is not necessary for diabetes unless you have complications or other conditions. Nor is using skim milk as it is a healthy fat. Doesn’t matter what country you are forum the disease is the same. Just the advice varies.
     
    • Agree Agree x 4
    • Like Like x 3
  • 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