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I have never been able to “manage” my levels.

L

LamaLiam

Member
Messages
6
I have no idea and no understanding how people are able to manage their levels, I have been Type 1 for over 10 years and I am yet to go even a month in a decent range. I am 27, I exercise daily I am fit and healthy APART FROM MY DIABETES. I just don’t know how anyone does it! I eat sensible, no take always, no junk, I do really try but I cannot get a grip on it. It’s a constant difficult battle, and now it’s taking its toll on me and my health.

Can anyone help?
 
Hi @LamaLiam , and welcome to the forum.

Do you use a CGM or Libre to see patterns in what happens?
Have you ever done basal testing to try to find out if your basal dose is about right?
 
Before I got the libre I could never ever manage my levels at all - it all seemed completely random.

In fact even when I got the libre I could see that it was still very random (there was some wonderful rollercoaster designs on my libre graphs) but I could see what was going on so could deal with it (ok some of it) which helped with my control immensely.

It also did show exactly why I was having soo many issues with my blood sugar in the morning - even though I tend to eat at 6pm/7pm at the latest, my sugars overnight were just another rollercoaster ride (different every night) - as it happens since mine is so rollercoastery the only viable solution for me was a pump

I'm a completely data driven person so have all the data suddenly available empowered me and meant I could actually do something about it rather than just base something on some snapshots during the day which didn't tell the story at all.

But yes, mine was always random afaik (40+ years) and was not controllable before now but I now have the tech to deal with it (pump and sensors) and so its a lot better controlled (though still unpredictable)
 
Hi @LamaLiam ,

Welcome to the forum.

Give us a little more idea on what insulin regime you use.. Do you pump? (For instance.)

I have to admit, I'm not always sure on certain days how others "do it." There does happen to be books written by T1s that don't have my lifestyle. & there are others online who are not me, either..?
So you are not alone...

However, one place to start is check the foundation of your insulin regime (as @Antje77 mentions) by finding out how your basal is performing..? Before tackling the other stuff.

This may help. https://www.mysugr.com/en/blog/basal-rate-testing/
 
Hi @LamaLiam and welcome to the forums.

It's never too late to improve your diabetic control but are your expectations realistic? What do you regard as a decent range? (If I judged myself by the standards of some of the folk on here, who are unhappy if their bgs ever go over 7.8mmol/L, I would curl up in a ball and cry.) For those of us with cgms (continuous glucose monitors) it's time in range that is key, and 70% is a typical aim.

What kind of insulin(s) and regime are you on and what are your diabetic team doing to help you?

Have you been on any diabetic courses (eg DAFNE if in the UK) and do you know how to carb count?

Sorry for the wall of questions, but it's hard to make recommendations without a bit more information.
 
I went for my annual review last monday and showed my metre to the consultant where he could see in the last 90 days it had ranged from 2 - 20 mmgl my hb1ac came back at 44 , I asked how I could improve my control to be more like the ones I see on the diabetes forum and was told don't even attempt it you're doing great and I will see you next year , it has been like this for 47 years and I have not had a problem yet so I wouldn't stress yourself up to much if you get readings outside the box but just do your best .
 
I'm type 1 and I am fortunately in range nearly always. I ate sensibly as you have described you do, then the first thing I did on my 'management journey' was cut out potatoes, rice, all grain products, anything with sugar, anything that I didn't know all the ingredients, anything high carb including many fruits, and anything premade. Some type 1s can eat things like pizza but not me. I keep a daily food diary and record how much insulin (basal and bolus) I take. Normally, a ratio of 10 carbs to 1 unit of fast acting insulin works for me but sometimes it doesn't. I do have hypos (rarely) that I can't explain or go over the top of the range but not by much. It's all about being persistent and discovering what works for you. It's important to be in range as much as possible because all the negative health consequences are due to high blood sugar levels and not because of diabetes (my opinion only of course). Read as much as you can on the topic and about carbohydrates. Dr. Bernstein was a revelation to me. Keto does not agree with me but staying lower carb (100 to 140 carbs per day) is what makes diabetes manageable for me. Best of luck on your journey.
 
Antje77 said:
Hi @LamaLiam , and welcome to the forum.

Do you use a CGM or Libre to see patterns in what happens?
Have you ever done basal testing to try to find out if your basal dose is about right?
Click to expand...

Hi, apologies for the delay in my response, been hectic in my house, me and the 4 kids have had the dreaded C word.

I have the Libre 2, regular alarms in the night most are false lows or just standard drops I have throughout the night, some are compression lows, my waking level is always far higher than a finger test, so it’s caused a
Fair bit of anxiety recently so have agreed to remove any sensor for a month for at least my mental health. My graphs are up and down constantly, for example a have at least a low once every other day and a high at least twice daily, my estimated HBA1c on there is average of 9. I’m not too hypo aware, I suffer low symptoms at around 5mmol so I am always suffering with severe anxiety if I am in the good zones of around 6 because I don’t notice the drop and it is always so quick from 6 to 4.
 
 

44 that is great! Keep up the good work, looks like your averaging in good numbers.

I have had between 60-80 in my last 3 reviews.
I’m having highs at least twice a day, in the 30s last week, simply forgot to have insulin because my life is just so busy, after 10 years I still forget to have insulin! My eye tests came back with a small change last year, significant change this year, got to see specialist. My cholesterol isn’t right, I’m 27 attend the gym every other day and basically only eat healthy, organic home cooked food (by me, I’m a chef) with portion control. Yet I’m a million miles away from getting things right, could be the needy wife and 4 children and the job and the fact the mother in law also lives with us at the moment (which is comparable to having at least 2 more kids)
 

It’s interesting to here this again, I have a feeling that I must have something else wrong with me, I’m just so god **** hungry all the time, always craving carbs, I find meals so under satisfying without the dry part, or the starchy filling part. I refer to diets as spoon or knife and fork diets, if you can get away with eating everything on your plate with a spoon then I just won’t enjoy it or be satisfied.

I don’t want to sound like I moan, but I’m a chef and have been a lover or food my whole life, my bmi says I’m well over weight but I am not, I attend the gym every other day and always portion control my meals which are always leaner options, I just love food so much and look forward to meal times but unfortunately diabetes makes it something I feel the opposite towards when the meal is based on my sugar levels rather than satisfaction.

The thought of the same types of foods, at the same times just sounds awful (but of course I can be stubborn and also knowledgeable) I know that I have to sacrifice a lot of this to be able to live a longer healthy life. My big question is HOW did you manage to cut these things out, I admire you for your consistency and persistence. I must admit how I am not so disciplined.

Thank your for your response and sorry my what now after re reading looks like me moaning.
 
Hi @LamaLiam. I would second @Jaylee's suggestion that you work on your basal levels. If they are wrong it's very hard to get anything else right and once you are getting lots of hypos you tend to also get rebound highs.

And unfortunately stress doesn't help (4 kids plus a mother-in-law sounds truly epically stressful). I think it's easy for some of us older people (eg me) to forget just how stressful life is when you have small children and it's hard to find time to have 5 minutes alone in the bathroom let alone strategise about insulin doses and meals.

As for the food, plenty of T1s manage without going desperately low carb, but I think you have to accept that you will get some brief spikes, which hopefully then go down to a normalish level. You don't have to be perfect to keep reasonable health (speaking from 52 years of anything but perfect T1 levels) , and I think all the exercise you take is doing enormous favours to your body and your future health.

Good luck.
 
Maybe check out free trial of dietdoctor.com? Actually a low carb/keto lifestyle site with a huge range of recipes. Definitely you shouldn't be feeling that you're hungry and constantly craving carbs.
 
Hey, I totally get the predicament you are in. I was a chef for five years. Ultimately I decided to quit and concentrate on my health for a while. I might have to return to being a chef in the future, but it is not very compatible with my current lifestyle (Keto/IF). I'd love to hear from more diabetic chefs.
 
Hi LamaLiam - I’m not a type 1 or an insulin user (I’m a type 2 on Metformin and Ozempic) but I *do* use a Libre full time and I just wanted to say that even for a well-controlled type 2 like myself, the line going up and down is really normal and for ever so many type 1 graphs I’ve seen, they’re up and down like a roller coaster. So don’t be unrealistic in your expectations.

Being hungry all the time must be horrible (. Personally I genuinely find protein and fat to be more satiating than carbs. I do miss carbs but more for the convenience than that they genuinely filled me up. Do you have enough fat and protein in your diet?
 
Hi @LamaLiam, it sounds as though you’re living in a maelstrom with six people who depend on you. Can you sit down with your wife, maybe when the children and the mother in-law are in bed, and have a discussion about how you can make life easier for all of you? I know you’ll both be tired by then. Maybe there’s someone who could baby and mother in-lawl sit while you both find a peaceful place.
There may be an opportunity for a bit of respite care for your mother in-law, If your mother in-law is in any way ‘challenged’ and you’re in the U.K. then Mind, and, if she’s old enough, Age U.K. and Age Concern are a good place to start looking. The GP service may also have some suggestions.
I notice that you do find time to go to the gym twice a week: is it the demands of a healthy life that are also causing stress? Hunger, stress, blood sugars, BMI, family, do you need a more peaceful bit of time out?
The difficulty of controlling nighttime sugars also gives you insufficient sleep and you NEED sleep. T1’s another toddler.
It seems clear that everything’s got on top of you.
 
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