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Totally confused...

Discussion in 'Type 1.5/LADA Diabetes' started by Renty, Nov 1, 2018.

  1. Renty

    Renty LADA · Newbie

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    Help and advice required please. Was dx as type 2 three years ago, numbers have got increasingly worse...hba1c last year was 105. Metformin obviously doesn’t work for me, prescribed canagliflozin too. BG numbers still through the roof so put on levemir once a day too...numbers still high...was 31.8 yesterday! Diabetic nurse wants me to start bolus injections too, but had to talk to diabetic dietician first. She thinks I’m actually Type 1 or LADA. So I’m now waiting for GAD test result to come back. I’ve read that this test isn’t always 100% accurate in that if I don’t show antibodies, I could still be Type 1. If I ask for the c peptide test, will that be affected by the fact I’m on insulin, so that would show up in the results? DN now doesn’t want to start bolus till we get the results...what if I need further tests after that...I’m terrified all these delays will contribute to future health problems. There just doesn’t seem to be any urgency with anyone. I certainly don’t think I’m type 2...got more in common with type 1/LADA.ie weight loss, other auto immune health problems, family history, etc. The whole delay situation is really upsetting me. Was told by GP that I’ve been high for so long, another few months won’t make a difference! I just want to get results and start new treatments ASAP...as current ones certainly ain’t working! I’d appreciate any advice, thanks
     
  2. kitedoc

    kitedoc Type 1 · Well-Known Member

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    Hi @Renty, From my experience of high BSLS, insulin for 52 years, not as professional advice or opinion.
    What I fear with high BSLs as a type 1 diabetic is the possibility of developing ketones as well and blood becoming acidic and me becoming very unwell within a short time.
    Do you have the means to test for ketones as well since some glucose meters can test both (note special strips needed for ketone measurement)? Your DSN could advise.
    To avoid the worse-case scenario whilst awaiting the blood test results ask your DN what if delay to further treating your high BSLs leads to diabetic keto-acidosis? ( sufficient ketones to cause acidic blood and threat to well being and life)?
    Awaiting results is not going to make you feel any better and you may get much more unwell.
    The high BSLs and possible ketones are the immediate problem/danger for me and possibly you, too..
    Whatever the diagnosis, T2D , LADA or T1D, and as you say the results may not be definitive, (but low C peptide helps establish if your own insulin production is low or not, and injected insulin does not have C peptide in it) these high BSLs still need to come down - and if, at the moment, long acting insulin is not enough then further measures appear needed.
    High BSLs over time make me feel terrible (e.g. before diagnosis), increase my risk of infection, deplete me of important minerals like magnesium, potassium etc, affect my eyesight, and that is in addition to possible ketones forming.
    If I was having high BSLS (and maybe ketones as well) my GP would not be sitting back and saying correction can wait a month or more!!.
    And if the diagnosis is uncertain why is she/he suggesting the more dangerous course of not treating your BSLs??
    Has your GP suffered from the sort of BSLs you are experiencing for so long? Unlikely I would suggest.
    Please steer towards safety - for your own health's sake.
     
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  3. Renty

    Renty LADA · Newbie

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    Thanks for replying. Think I need to start standing up for myself and not be dismissed by the medics involved. Put my big girl pants on!
    I do have ketone stix to test with...was about half way along the measure gauge once, rest of the time low. Thanks for the info re the peptide test...I’ll mention that to them in my next phone call. All I can do in the meantime is keep going with the metformin, canagliflozin and the daily levemir. Thanks for your advice x
     
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  4. JoKalsbeek

    JoKalsbeek Type 2 (in remission!) · Well-Known Member

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    Can I ask, what are you eating? Because if they're dragging their feet helping you (and it sounds like they are... "What do a few more months matter?" Seriously?!), and medication isn't doing what it should, maybe reducing carbs can at least for a while, help get your bloodsugars down. If you were misdiagnosed and instead of a T2, a T1/Lada, that won't fix things and you'd still require insulin, but it could be a way to at least get those numbers down a little until someone offers proper help. Because being sky-high isn't doing you any favours. Just, if you do reduce carbs (to, say 80 grams a day or something? I wouldn't attempt ketosis with those bs numbers), keep an eye on your bloodsugars. I don't know your meds so you might hypo if you reduce carb intake.(Assuming there is something to reduce to begin with).

    It's just an idea. As you yourself suspect T1/Lada you probably already know diet would only help up to a point with that, but right now, with numbers that high... And no help in sight... A bit of reduction in bs would be nice. Just be careful eh.

    Good luck!
    Jo
     
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  5. Renty

    Renty LADA · Newbie

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    Thanks Jo...yes I’m watching what I’m eating too...since Jan I’ve seriously cut down on pasta, rice, potatoes, etc. Only eat lower carb bread (only 2 slices per day). Radically reduced milk (I could easily drink 1.5 litres a day). Lowest BG reading I’ve ever had was 7.8...that was a one off. Glad to know that I’m not being over anxious about these delays...just worried about my long term future . Thanks for replying x
     
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  6. Daibell

    Daibell LADA · Master

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    Hi. I went down the same route. Do press for the Bolus. I was put onto just Levemir and my DN asked me to give her my results. Within a month she added NovoRapid (Bolus). It doesn't matter what your diagnosis is; if you need insulin you need it and if just Basal isn't enough then a Bolus should be added. My GAD was negative but my c-peptide was right at the bottom of the range. Taking insulin does not affect the c-peptide measure so the test will be valid.
     
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  7. Alison54321

    Alison54321 Type 1 · Well-Known Member

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    This is not very good, at all. Where are you, are in the UK, or not? At least you're getting levemir, which is better than nothing, but the caution about prescribing fast acting, does seem a little strange.
     
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  8. Deleted Account

    Deleted Account · Guest

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  9. kitedoc

    kitedoc Type 1 · Well-Known Member

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    Hi Again @Renty, blood ketone measure is better than urine stix, that is why I suggested you speak with your DN as soon as possible to get that sorted.
    That and the need for further treatment with insulin to improve those BSLs
    are far more important at this stage than the C-peptide test as others have also said. And again the test sounds like it needs to be done soon but the delay until the result is best filled with keeping your high BSLs and any ketones at bay.
    If you mention that a urine ketostix was positive, that should be enough to motivate the DN to do more.

    Your doctor sounds like a dead loss. Is there a more enlightened one you can see?
    And some feedback, the bold, italicised print you use is hard on the eyes, as I was also told in the past.
    Normal font with perhaps italics for emphasis seems to be the acceptable standard.
    Please get things sorted before the weekend !!!
     
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  10. Irene Banting

    Irene Banting Type 1 · Member

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    As well as all the above advice, maybe at your next visit put your big girl pants on and write a Letter to the doctor outlining all your concerns, outline your blood glucose levels, symptoms, ketones, concern regarding just waiting, and that you wish to start bolus insulin while awaiting results. Hand the letter to the doctor or DN and ask him/ her to file your letter in your medical notes.
     
  11. Grant_Vicat

    Grant_Vicat Don't have diabetes · Well-Known Member

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    Hi @Renty I would suggest you go to your hospital website and look up PALS which is a marvellous way of stating your very real concerns to an independent official. I have done this on several occasions and have got the desired result in less than a week. Make sure you mention those horrifyingly high results and that their reaction does not appear to take your condition seriously.
    Very best of luck.
     
  12. messy

    messy Type 2 · Member

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    I read your post with interest. I'm in same position.

    I was diagnosed 4 years ago with type2, went onto a low carb diet circa 100g per day and 1000mg metformin per day, all ok for 2 years, then my blood sugars started to rise, put onto alogliptin and metformin increased to 2000mg per day, helped a little further reduced carbs to 60g per day.

    During the spring I changed surgeries and went for a review, my HbA1c was 97, prescribed trucility pen, don't reduce my blood sugars at all, just kicked off my crohns disease, so after 2 injections my GP stopped it and put me on Canagliflozin blood sugars still very high, ranging from 12 to 23 mmol, I reduced my carbs to 30g per day over a month, lost 10 kg of weight, but blood sugars remained over 12'or higher, average 14.5. I spoke to my GP and asked for insulin, was told I don't need it.

    Well I bought some ketones strips early last week, urine ketones 16 mmol, blood sugar15.6, I panicked and called 111, told to go to a&e. Blood gases done. Not in DKA, but my blood was becoming acidic, given IV fluids and discharged, told to go back to GP, at that point I had lost confidence in him, so on Wednesday morning I registered with another practice. By thursday the ketones were rising again, called new practice and spoke to the nurse, gp appointment with 2 hours. He was horrified by my ketone level of 2.6 mmol and sugar level of 14.3, by this time I hadn't eaten for 21 hours just felt so sick. He admitted he wasn't an expert in diabetes and can't get me an appointment within the practice until Monday to see anyone with expertise. So sent me to the ambultory emergency centre at the local hospital.

    Saw a diabetic nurse who told me a eat 50g of carb and to came back of friday, bloods taken for c peptide and GADS testing.

    Now on levimar 10 units twice a day and nova rapide 5 units per meal to be review this coming friday, blood sugars still high, but apparently my body needs to adjust to insulin and we need to find my.level.
     
  13. Circuspony

    Circuspony Type 1 · Well-Known Member

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    If you can test ketones and they are high then forget the GP and go to A&E.
     
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  14. Irene Banting

    Irene Banting Type 1 · Member

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    Thank goodness you are on insulin now. And that they are doing the appropriate tests so you can find out what type of diabetes you actually have. Misdiagnosis is common. Did the diabetes nurse give you dose adjustment guidelines? How high are your BGLs now? And your ketones? Often people need quite high doses to get the levels under control, and then down the track start having hypo's and need to reduce the doses back down, so just make sure you are prepared for the possibility of having hypo's.
    Agree with Circuspony that if you can't get the ketones down, and/or you are symptomatic of ketoacidosis (nausea, vomiting, stomach cramps, cramps in legs, breathlessness often described as air hunger) then you need to go to A&E
     
  15. messy

    messy Type 2 · Member

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    No adjustment guidelines as yet, she starts you on a low does, so you can get use to injecting, dose increased on sunday by 1 unit of nova rapide per meal and 2 units per injection of levimar. Have an appointment on Friday morning with her for further adjustment.

    Blood sugar first thing this 13.2, no added sugar yogurt for breakfast, 13.8 mmol two hours later, 11.8 before lunch, cheese and onion sandwich for lunch.

    I'm have been married to a t1 for nearly 20 years, so at least I have an understanding spouse who knows how I feel.
     
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  16. Irene Banting

    Irene Banting Type 1 · Member

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    Oh good, your husband is your best resource then. Sounds like your levels are going in the right direction. All the best.
     
  17. rmz80

    rmz80 Type 1 · Well-Known Member

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    In about 2015 the NICE flow chart used for diagnosis put less emphasis on GAD tests (mainly because it can be wrong). If you happen to be type 2 and you start base + bolus insulin it’s just the inconvenience of dealing with insulin that’s a problem.

    It’s when they get the diagnosis the other way round for someone who is really type 1 but are treated as type 2 with metformin. Their HbA1c goes through the roof and is NOT good news to say the least.
     
  18. Daibell

    Daibell LADA · Master

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    Sounds like my diagnosis. I'm glad that GAD is given a lower emphasis as a T1 test. It may be the main cause of T1 but is certainly not the only one. There are other rarer antibodies that may not be tested for and then there are viruses. My GAD was negative but a high white cell count and an ongoing mild, dull pain in the pancreas area was a hint of a virus but I neglected to have that checked out further. That all went a long time ago but very high BS followed and finally Basal/Bolus has managed my diabetes.
     
  19. Codexy054

    Codexy054 · Member

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    I hear you, the process is very slow and different 'experts' tell you different things that can send you on a pointless path. The best advice to short cut your learning is get on a DAFNE course at you local hospital. You'll be in a room for a week long course with a bunch of other diabetics and a specialist team. They make you keep a diary and over the week try to work on your insulin requirements and they will give you prescriptions as needed. You'll learn a lot. From there depending on a few factors, you'll know what is right for you. If you are Type 2 and or 1.5 (LADA) and you are producing insulin that the body can't get absorbed right, then giving you more insulin is like giving an alchoholic more booze....they are just treating the symptom. Watch this for a bit on this idea -
     
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