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Confused and a bit despondent

Discussion in 'Newly Diagnosed' started by Artigas, Jul 15, 2020.

  1. Artigas

    Artigas · Newbie

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    Two months ago after feeling ill, having blurred vision and drinking and weeing lots I took a Blood Glucose test and had a reading of 29mmol/l

    I had a pancrecectomy in 2013 so was semi prepared for this and went to the diabetic clinic at the hospital where they gave me insulin (Humulin m3, 22ml morning and 20 evening) unfortunately due to covid there's no further support other than a phone-call in 4 weeks time (though i can call the clinic if needed, however I don't feel like i'm getting the advice i need)

    On my last appointment (via phone) the nurse said it looks like i'm type 2 and that they'd eventually decrease my insulin. I was a little surprised at this as i'm getting mmol/l of around 7-9 mid day, 5-6 mornings and 10-11 at night. I guess the diagnosis can wait for now. However my diet is low carb (well i think it is) and has been since my operation 7yrs ago. It was a rough time, requiring two operations and it shook me enough (I was told at one point that i should write a letter to my 3 month old son) to adhere to a fairly strict diet ever since... so I find it hard to believe that whatever is happening to me right now can be fought with diet alone. My meals for the last 7yrs generally look like:

    Breakfast:

    usually 3 desert spoons of Natural Yoghurt, 2 teaspoons of low sugar granola, 3 strawberries/5 blueberries
    or 2 slices of wholemeal toast, 2 rasher of bacon, 1 poached egg
    occasionally 2 slices of wholemeal toast with marg or butter

    Lunch:
    Usually a greenleaf salad with fish or chicken. Sometimes with cheese
    or Wholemeal Sandwhich
    or homemade vegetable soup (no potatoes)
    occasionally Wholemeal Pitta, celery, carrots, 1 teaspoon of hummus

    Dinner:
    Chicken or Fish with greenleaf salad, wholemeal rice. Occasionally with potatoes (Two small)
    very occasionally Pork (hard for me to digest)
    Never pasta or white rice
    very occasionally a very thin base pizza

    As I've had no advice regarding diet I have no idea if this is too many or too little carbs



    I still have a four week wait until my next phone appointment and have been told that there is no online course for help with diet and insulin management so i have to stick to the rigid doses morning and night. The diagnosis issue i feel won't be resolved for a while but i feel a bit helpless and unsupported in understanding what's happening to me. I've not had a reading below 4 mmol/l but have had the symptoms of hypos, I've also still had the odd high number but. Today I had consistent 6's followed by a 5 and a 6 after dinner that felt like hypos(this was really unusual as normally i get my highest readings of the day after evening meal?) Is there anywhere I can turn for advice even though I don't have a diagnosis?
     
    #1 Artigas, Jul 15, 2020 at 3:04 AM
    Last edited: Jul 15, 2020
  2. Tophat1900

    Tophat1900 Type 3c · Well-Known Member

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    Your diet is certainly not low carb, with the bread, rice or potatoes, granola etc. The lower numbers are good, but in using insulin you have to be careful that these are not dropping down really quick and that this isn't a sudden downward trend. Are you on a fixed mixed insulin?. If not you need to start working out dosing and making sure they don't continue to keep going lower and lower because if you have made further changes to your diet the dose you are taking may well end up being too much. When low carbing insulin may have to be adjusted if you make it even lower. Call if you think you need more info or advice from your team on this.

    The feeling like you are hypoing could be a number of things, your body is not used to lower numbers after a long time of high readings. It could also be the insulin is not matching the food now and maybe a little too much, so levels drop a bit too quick. This happens to me sometimes if the amount is too much.

    Check out the red link below for diet advice that is often given to new members here, even though you aren't new to diabetes. You may find it helpful.

    And welcome!
     
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  3. JoKalsbeek

    JoKalsbeek I reversed my Type 2 · Well-Known Member

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    Diabetes after a removed pancreas is usually Type 3C, which is a term practically no-one knows. Our cat had it, and the vet kept insisting it was type 2, while his betacells were just not functioning at all, making zero insulin due to pancreatitis. A Type 2 makes insane amounts of insulin, but is insensitive to it. Too much or too little, different causes, I'd say you need someone who knows what your actual type is and will act accordingly. (We ended up taking Night to the university clinic because the vet couldn't get it right on his own, but even the professor there claimed T2...! And that's an expert teaching classes! No wonder I was confused as heck when I developed T2 and everything I thought I knew was wrong!)

    As for your diet, it is a far cry from low carb. And I do think there's ground to be gained here. You're putting pita, carrots, wholemeal sandwiches/rice and spuds into a system that can no longer deal with any of that. https://josekalsbeek.blogspot.com/2019/11/the-nutritional-thingy.html is geared towards T2's, but I think maybe it'll be of some use to you too. Careful with the insulin injections though, you can hypo with this stuff. Also, if you're getting hypo symptoms, they could be "false hypo's". Feels like one, acts exactly like one, but doesn't have the numbers to back it up. Your body thinks it is low so it freaks out, and it usually happens when it is used to being higher, so it thinks it's all hands on deck when you actually are in the normal range. The more you are in range though, the less that'll happen.

    Good luck!
    Jo
     
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  4. Artigas

    Artigas · Newbie

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    hi thanks, I posted late at night and should have given more information. The nurse at the clinic told me my diet was fine and changing it would make little to no difference. I’m on a fixed mixed dose
     
  5. Artigas

    Artigas · Newbie

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    Hence me feeling confused - I don’t thInk I’m getting the right advice, especially when they dangle insulin management but tell me it won’t be happening at the moment due to covid
     
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  6. EllieM

    EllieM Type 1 · Moderator
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    Tears hair out!

    OK, two likely, completely different, options here.

    1) You are T2. In this case you are insulin resistant and your body is maxing our on the insulin it can produce and yet that is not enough. In this case diet is everything and reducing carbohydrates should lead to lower blood sugars and (hopefully) an evential elimination of medication.

    2) You are T3c and your pancreas can't produce enough insulin to cope with your needs because it just isn't producing much insulin. Again, low carb will help because it's possible that the small amount of insulin that you make will cope with a lower carb diet.

    3) I know I said two but I'll put this in for completeness - you could be developing T1/LADA, in which case an autoimmune disorder destroys all your insulin producing cells. In this case low carb will help but long term you will need insulin.

    I'm going to rule out number 3 at the moment because 1 and 2 are so much more likely. And if you are not being taught to count your carb intake then there must be an assumption that you are producing some insulin.

    T3c is quite rare, so there is a strong possibility that your DN assumed T2 because she did not consider T3c as a possibility.

    https://www.bertieonline.org.uk/

    is a good online resource for insulin dependant folk (mainly T1) but would also work for T3c if you are stuck with insulin.

    The blood test you need to differentiate between T2 and T3c is a c-peptide, which will measure how much insulin you are producing.

    Good luck.
     
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  7. type2_2020

    type2_2020 · Active Member

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    I think because you were so high, they are being cautious, this is why you're on a mixed insulin. Give it a month or 2 for your body to get accustom to the normal range and you'll be fine. Be careful to check you BG levels before and after meals, your meter is your best friend.

    The diet you're on I wouldn't call it a low carb but a medium carb. You need to be a bit more strict and change pita bread for lettuce or similar substitute. Your insulin dosages aren't that high if it's mixed insulin, so that is a good sign. All grains are starchy, so bread whatever the type is a no go, try a salad with avocados, cheese is fine, you body can function on fats rather than sugar / glucose and would help with weight loss as well. Pizza also isn't low carb.

    Just keep up the good work. Diabetic teams seem to want to stick everyone on insulin when they've either neared DKA or had one. I just see it as an overdose of sugar in your system but the lasting affects can cause complications. Your recent range looks promising and on a downward trend.

    I had the same issue when I was coming down from 32.8 full blown DKA, I came down too quickly and would feel like I was having a hypo, this is normal, your body is just adjusting to the lower levels and your baseline might be a bit higher and your body starts wanting to respond thinking there's a problem when your meter says otherwise, this doesn't last for long as your body normalises and a new baseline is set.

    I can go as low as 4.2 now without having any symptoms of a hypo but generally try to stay in my range 4.5 - 5. Work with your Diabetes Team and keep them regularly updated as to how you're coping or not coping, they will eventually ween you off gradually if you continue this downward trend, depending on what type you are. I think it's important to know what you're working with so quiz them about taking some test to determine what type you are.
     
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  8. JoKalsbeek

    JoKalsbeek I reversed my Type 2 · Well-Known Member

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    If I'd listened to the nurses, the endo and both dieticians, I'd be on insulin right now and still morbidly obese. Though possibly lost weight due to the lacking leg or two. (I am kidding, though, as it doesn't go that fast of course.... But if I hadn't tackled my blood sugars when I did, liver cirrhosis was just around the corner. That would've been an ugly end, and I don't think I'd still be here today.) Seriously.... If you feel like the advice you're getting is flawed or non-existent, trust your meter. Experiment. I read a lot of different books with conflicting advice when I was diagnosed, the advice from medical professionals came later as I was diagnosed right when everyone was on holiday, but.... It was my meter that told me whether or not someone's theory would work for me in practice. If you want to give low carb a try, do. If you want to know what's going on with your insulin production, get a C-peptide test done, so you know how much you're still making. These things matter. And they may not to the GP or nurse or whomever, but they will matter to you, and your quality of life.

    Hugs,
    Jo
     
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  9. Tophat1900

    Tophat1900 Type 3c · Well-Known Member

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    That is so incredibly untrue about diet.

    Personally, I'd hate to be on a fixed mixed dose and not have the freedom of being able to eat and just adjust insulin to suit. You could discuss that if you wanted to with your team.
     
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  10. Daibell

    Daibell LADA · Master

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    Hi. If the pancreatectomy did remove much of the pancreas then you can't be making enough insulin. If so you should be defined as Type 3C which is equivalent to T1. How can the medics think you are T2 when you have at least part of the pancreas missing? Your diet isn't bad but you could reduce the carbs a little bit more.
     
  11. KK123

    KK123 Type 1 · Well-Known Member

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    I think that much of the confusion for people comes from various interpretations as to what a 'low carb' diet is. On THIS site it says up to 130carbs a day IS low carb and that seems to be pretty much what the poster is sticking to. Obviously 130 carbs a day may be more than a person can tolerate but it's still low carb. I can see why people are confused when so many replies start off with 'That's NOT low carb' when actually it is, just not necessarily low enough for that individual.
     
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  12. EllieM

    EllieM Type 1 · Moderator
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    I was on one for the first dozen years of my life (yes, I'm that old). But if you're on a fixed mixed dose you need to count your carbs and have the same amount at the same time each day. If the diabetic nurse isn't talking about carb counting at all then that suggests to me that either he/she is negligent, and/or that @Artigas is still producing some insulin to help counteract the carbs.

    For the nurse to say that diet is unimportant is mind boggling though, as whether T3c or T2 diet is very important (even if it's only carb counting that strawberry cheesecake:)).

    Well, I guess it wouldn't be impossible to be both??? T3c (so reduced insulin production) and T2 (insulin resistance so you need to pump out more insulin for your carbs, and your pancreas just isn't up to it)??? But either way going lower carb is probably worth a try, as it should reduce any insulin resistance and reduce the demand on the pancreas.

    But you do need to be very careful when you reduce carbs if you are on insulin, as that can lead to hypos and some T3cs have reduced ability to cope with hypos because not only is their insulin production reduced, but so is glucagon production (glucagon signals the liver to pump out sugar if your blood sugar goes low). Please tell me the nurse at least told you about hypos? That is critical information for anyone on insulin.
     
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  13. Tophat1900

    Tophat1900 Type 3c · Well-Known Member

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    My carb total for per day is around 20g... counting carbs in nuts, yoghurt and some brocolli. My insulin production is quite poor and the last time I spoke to a dietitian (I didn't ask to) she told me to eat bread and sweet potatoes and that I don't need fast acting insulin and to stop using it. It was basically a recipe for DKA.... I could not believe the garbage I was hearing and of course I Ignored everything she said and left feeling quite irritated at the advice I was given (even though I didn't ask for it). I stated I was very much insulin deficient on a number of occasions. The horror stories about dietitians and DN's just seem to keep piling up on here.
     
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  14. VashtiB

    VashtiB Type 2 · Moderator
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    I second the advice that you've been given already.

    I am sorry that you have not been given the help and support from your medical team that you should have.

    Diet is important for diabetics. Testing is important t for diabetics.

    I second the advice about reducing your carbs and testing regularly so you know what your levels are. I also second the advice to get more tests.

    The good news is that you have found this site- as you can see already there are some amazing people who are willing to give some advice and lots of support.

    I'm a type 2 so unless you are type 2 my advice is not that helpful but happy to give a virtual hug.
     
  15. type2_2020

    type2_2020 · Active Member

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    Same this happened to me. I gave up after 3 weeks and did my own thing. So happy I found out about low carb and like you I do 20g or less per day.

    Dietician told me exactly like you what i should be eating and it was all carbs. I also didn't ask for her advice but she calls every so often and I just let her know i'm doing my own thing that's proven for me at least, is working great. If I listened to her I would still be in hyper range. Low carb all day and all night. Soon I'll be on just diet alone.
     
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  16. Tophat1900

    Tophat1900 Type 3c · Well-Known Member

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    That's great!

    Sounds like you are making good progress.
     
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