So I had my first annual review yesterday. At my diagnosis, although I think I was told my Hba1, it’s not on my records on the NHS app. So I asked, and it was 14.7 with high ketones. I hadn’t had any particular symptoms until just after I’d recovered from a covid infection, when I suddenly felt like I’d been hit by a bus. I think perhaps drinking juice (which I hardly ever drank) and no activity, when usually very active might have pushed my blood sugars up to 15. Called in by doctor immediately and put on insulin (basal). Not overweight, very active and blood pressure etc fine. My dad was diagnosed in later life, slim and active with a good diet, so DN said I was just unlucky. Anyway went onto a low carb diet, and got it down to 7.1 in 3 months. However I was losing weight (muscle mass) a spiking a lot after meals, so in April I asked to be given bolus as also intense exercise was raising my blood sugars. Now hbac1 down to 6.3 which I’m pretty pleased about especially as I had a nasty cold in september which sent my blood sugars sky high and took a few weeks to settle. No Neuropathy. Blood tests in April showed raised cholestrol ( perhaps from eating too much fat to try and put weight on) but on low dose of statins so reduced by a third. Funnily enough my triglycerides were low but my Ldl a bit raised. I’ve put some weight on due to the bolus, but I’ve managed to decrease my requirements to 10 basal and around 6 bolus. Keep my blood sugars in the 5 and 6 level and I couldn’t cope without my self funded cgm as I can be proactive with my insulin. When it goes high, I feel dreadful. So now just to lower my weight a little although I still have a healthy BMI, because when my weight is lower, my insulin requirements are lower. Quite hard though as I don’t really eat many calories. I have struggled this year, because there are other things I am dealing with, but I came out of that review happy
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Big reduction in Hca1a
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Bruce Stephens
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Have they considered you might have Type 1? (An obvious question and presumably they have.)
I did have a test for that I think. Because the doctor was quite confused about the ketones and lack of previous symptoms. TBH it wouldn’t really change anything. I’d still stay low carb because the bolus is causing some weight gain and I don’t want that. I have no problem eating low carb because I never ate loads of high carb food anyway. No chips, hardly ever ate bread, ate a takeaway pizza maybe once a month and love vegetables and salads. ( it def wasn’t caused by my diet) I’ve found plenty of alternatives. And otherwise I’m very fit and healthy. I actually wonder whether my active lifestyle kept my blood sugar from going to the level that I felt unwell, and it was isolating and just sitting in a bedroom that allowed it to rise so dangerously. A couple of months earlier, I was on holiday, scuba diving, trekking in the jungle, kayaking, Turtle night patrols - miles walking on inaccessible beaches, and the only thing I noticed was my legs getting tired. Turned out to be lost muscle mass, which i’ve now reversed
More likely, you have stopped losing it because your body was breaking down your muscle mass without it.
To my understanding, insulin (the same stuff as a healthy pancreas will produce) does not cause weight gain. It is excess insulin that causes it.
This is a very important distinction for people with Type 1 where Diabulimia is a very serious condition. Propagating the myth that injecting insulin causes weight gain can make this worse, especially amongst the age range where diabetes is most commonly diagnosed: young adults.
I had the same thought as @Bruce Stephens about Type 1.
Bruce Stephens
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It would clarify things. You might be offered suitable training (which is available online for free too) and you'd have access to more technology. (In England at least you'd get the CGM on prescription.)
Bruce Stephens
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All that sounds completely consistent with late onset Type 1, TBH. And childhood onset for that matter except that things usually happen very quickly and not particularly because of any change in behaviour.
Yes I understand that I have stopped losing it, and also by doing weights and strength training, I have increased my muscle mass. However with the diet that I eat and the exercise that I do, I should not be putting on weight now. The diabetes nurse said that the bolus causes weight gain. I gained the weight when I was unwell and having to bolus twice the normal daily amount and increase my basal until it settled down. As soon as I stepped out of bed, it was shooting up 3mmol before I even ate.
I did enquire a couple of month ago about the results and the Diabetes Nurse sent a message saying i’m type 2. Not sure I need training now. I certainly did before but was offered no education atall, just targets scribbled down and told to eat 60 carbs a day. Not even told about increasing basal till it was keeping blood sugar level. However I researched and researched, and listed questions to ask her. When I asked to prescribed bolus, she actually said to me, i’m only doing this because I can trust you and you’re really good at keeping track of carbs. And I had struggled for 6 months, getting really upset because I couldn’t control my sugars on the the 60 carbs she said I needed. I did a 2 week diary eventually eating pasta rice bread cereal, all under 60 daily carbs to show her how high i was going. Increasing my basal meant my blood sugar went too low at night so I couldn’t sleep. I was pretty mad about her not considering giving it to me before.
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This is not uncommon. It is called Dawn Phenomenon or Foot on the Floor.
I am sorry but I completely disagree with your nurse about insulin causing weight gain. People without diabetes have insulin when they eat and that does not cause weight gain.
Please read about diabulimia and think twice about repeating this as it is dangerous.
I know about dawn phenomenon, but it was much worse when i was unwell. I started taking berberine, with my meals and doesn’t happen now.
trophywench
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Over on DSF we used to have an emoji specifically designed to portray nurses like yours and she had a specific name. It depicted the head an shoulders of a lady in an nurses cap like they used to wear, coloured purple and christened Nursie Nightshade. Of course bolus insulin does NOT cause weight gain!! It merely enables the human body's cells to absorb the nutrients of the food that body eats and convert the carbohydrate content thereof to glucose. Remember - there is carb content in even lettuce and cucumber, let alone the starchy and sweet tasting sorts.
Inka
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trophywench
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Everything in the body is affected when we are ill! Keep telling folk - when I broke my patella I needed THREE times the amount of insulin I needed the day before I did it to get my BG back on track and rid of the ketones only very gradually reduced back down to anything like normal levels for me over the next several months. That was drastic and I was utterly gobsmacked by it.
rebrascora
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My thoughts on reading your post are the same as others. You sound very much like you are Type 1 to me too. Especially if it happened hot on the heels of Covid as that can trigger the immune system to attack your beta cells. The fact you needed to go straight onto insulin, your low insulin doses, your healthy BMI, your high ketones. What more do they want? You tick pretty well every Type 1 box. You need to find out which tests were done to establish what type you are and the results, not just positive or negative, but actual numbers. In particular you are looking for GAD antibody tests and C-peptide.
Getting Libre or other CGM on prescription alone is enough of an incentive to get the correct diagnosis, but it would also open up the possibility of other technology like a pump in the future if you needed it.
Getting Libre or other CGM on prescription alone is enough of an incentive to get the correct diagnosis, but it would also open up the possibility of other technology like a pump in the future if you needed it.
I don’t eat any sweet starchy vegetables
Pretty sure I had those tests as I had to go to the hospital for them, because GP was perplexed by my ketone level. However from what I understand, this can happen with Type2 diabetes, when the body can’t use insulin, and blood sugar is dangerously high. I did try to get results from reception a couple of months ago, but they passed query on to my diabetes nurse who just said she’s type 2. I might write to my GP, explaining that I would like to see the results and that I’ve already tried through my diabetes nurse. Anyway I’m quite happy at the moment, my bloods are great and I’m feeling great
rebrascora
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Oh and many congratulations on your HbA1c result! That is a great achievement!
Even in the absence of sweet starch vegetables, you are likely to still be eating carbs unless you eat a full on carnivore diet.
Bruce Stephens
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I'm sure the way you're managing it wouldn't really change. I think we're all thinking that your treatment is basically like Type 1 but you're not receiving the support (mostly technology) that people with Type 1 now have. So it's worth querying again, I think, just in case. (And yes, it's stupid that someone with Type 2 who has basically the same needs as someone with Type 1 doesn't receive the same, but that's where we are.)
Not a disaster if you end up with the same diagnosis. We managed OK a decade ago, most of us without the fancy technology.
I know about carbs. I carb count and eat less than 60 a day
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