The logic behind basal twice a day, but no bolus

[Madeline]

So the pancreas is still limping along. I’m still on 4 units Humulin I in the morning, and until recently that worked ok as long as I kept carbs to a minimum. Minimum being 1 slice of wholemeal bread, or a 150g baked potato, or the equivalent in another carb - as long as it stayed under 20g a meal or 60g ish a day that worked. But my levels kept creeping up in the evening so I was rarely less than an 8-9 going to bed. I asked for help, and was told to add in another 4 units of basal with dinner.

It doesn’t seem to be doing much tbh, I’m not going low at night, but it’s not actually changing my levels from dinner. Should I try taking it earlier? Logically to me it feels that I’d be better off with a small bolus to sort dinner out, and maybe make allowances for the odd treat. My eating is SO rigid, I literally can’t afford any variation because I have no wiggle room. Had sushi rice instead of basmati the other night and wound up at 15.4 with no way of sorting it out apart from chugging water and peeing all night. I can’t walk it off because of the idiot lungs.

Me and the consultant and nurse do not get on. She’s very rigid in her thinking, thinks the Eatwell plate is God’s Gift and I’ve only just managed to get a meter out of her (only 2 pots of 50 strips a month though). He is very difficult to understand (I have hearing issues, he mumbles, doesn’t look up when he speaks, and has a very heavy accent. They both still think insulin makes you fat. I’m not fat, I’m not exactly wasting away but I’m steadily losing despite the horror of the fat building insulin lol.

 

[everydayupsanddowns]

Ah that sounds really difficult @Madeline, and it's especially tricky when you feel you and your HCPs aren't pulling in the same direction.

Would you be able to use that as leverage with the nurse? Explain how limited you are in the carbs you can eat, and how you are 'forced' to eat a low carb diet because the basal insulin just isn't up to covering meal carbs, and if you raised it enough so that it was you would be going hypo all the time that you weren't eating.

From what you've said I wonder whether you might be LADA or something similar anyway, in which case you should be on basal:bolus MDI insulin like a T1.

And FWIW I've been taking insulin every day for almost 30 years and I'm still pretty much the same weight as I was when I was diagnosed at 21. So insulin doesn't automatically make you gain weight (though I know it *can* trigger weight gain in some people).

 

[Inka]

I agree that a small amount of bolus insulin makes more sense. As said above, maybe you could use the nurse’s love of the Eatwell plate to persuade her it’d be a good idea. If she’s on side, it’s more likely the consultant will consider it.

Did you tell them about your 15.4? I’d be asking for better tools to control your blood sugar (ie bolus insulin). Sometimes you have to be a little more forceful than you’d imagine.

As you have hearing issues, please do ask the consultant to speak up and look up. They’re there to help you and if you can’t catch everything they say then that’s not good. Don’t be afraid to mention your problem and what they need to do to help.

 

[Madeline]

Last time I was in ICU they had me on some balancing drip thing (sorry, very technical lol) for insulin, and they couldn’t understand why I’d been diagnosed with T2 - my Dad’s LADA, we have a ton of autoimmune issues, I went from being fine one month (spend a lot of time in hospital/ICU with the useless old windbags and am heavily monitored in there, no signs of diabetes even when on a feed and being continuously monitored for BG) to catching some hideous virus in the August to being diabetic by end of October. I think they looked at me, saw the steroid moon face and assumed - I don’t respond to oral meds either, and am not on any.
Pitching a fit about my diet was how I (well the Small Madeline) got me on insulin. They tried me on the 800 cal diet to reverse it, BG went bonkers, I found a high protein/VLC shake to replace, helped a bit, but my blood results for everything was off and I couldn’t continue. It got to the stage where I was eating virtually zero carbs to stay even vaguely in range.

Got asked why I was self testing when I kept pointing this out! At that point the Small Madeline waded in and got firm, and pointed out how u unsustainable this all was, and why on Earth weren’t they putting me on insulin and testing me for T1. That’s when the insulin makes you fat comment was made, and she responded with insulin is insulin, whether you make it yourself or inject it. They put me on insulin lol. I’ve still not had any tests either.

I just have zero faith in any of them, even the dietician sings from the same hymn sheet.

 

[Madeline]

Sorry for bleating on, I just can’t believe that I’m still fighting this idiocy nearly two years on.

 

[everydayupsanddowns]

Please do press for an accurate classification, if you have the energy. You don’t look to have much insulin resistance or some of the other common T2 markers, and you have LADA and autoimmune in close family

Being diagnosed as LADA would give you access to different, possibly much more suitable treatment options, education courses and technologies. If you have been mis-classified, all the research evidence informing your treatment modalities will be based on the wrong condition!

 

[Madeline]

Thanks Mike and @Inka, I think I’m going to have to. Thank goodness I have my family onside.

And thank goodness even more for this forum, if I’d not found you all initially I have no idea where I’d be; blindly following their advice and wondering what I was doing wrong probably.

 

[DaveB]

Hi. Yes, do ask for the two T1 tests and if that is refused ask for a referral to the hospital clinic. When you are a 'genuine' T2 your pancreas will be working well and producing too much insulin which can't be used easily as you will have insulin resistance thru excess weight. LADA in it's early 'honeymoon' stages will often work with just tablets or some Basal but will get worse. If you can 'prove' you are T1 will will be put on Basal/Bolus as that's what NICE says. If your HBa1C goes above 7% in old money you can insist that the nurse/GP follows NICE protocols and does the T1 tests and gives you Basal/Bolus.

 

[Madeline]

It was 8% (64). So I should have been tested anyway?

 

[leonS]

On its own 7% possibly not, but if there are other things then the Hba1c don't mean much. If you have been on tablets and they did not work, you needed insulin and still struggle then the c-peptide and GAD are called for.

Are you on medication for diabetes other than insulin? If not what on earth do they think that they are treating? If you are T1 medication by mouth just will not work anyway.

Humulin l is not really a base insulin intended for use with a short acting bolus. It is intended to be used on its own as a sort of combined treatment. This is not, perhaps, the best treatment in use (would be considered old fashioned by some).

"A balancing drip thing" sounds technical enough to me, but why did they not prove that you were T1 instead of just not understanding why someone thought you were not.

 

[Madeline]

I started off on Metformin, 500mg twice a day, didn’t do anything, increased to 3x a day, then also put on Gliclazide, which also didn’t work and was stopped. At this point, I’d found here and was getting good advice and suggestions that insulin was indicated. I’d got to the point where I was eating just meat/fish and vegetables like brassicas to stay in range. Put on 4 units of Humulin I (am) which instantly worked, and meant I could eat pretty normally. That’s gradually changed and I was back to restricting to 20mg of carbs a meal max. That’s when they doubled it to twice a day, which isn’t really helping as it’s not reacting fast enough to account for dinner, although it is keeping me steady at night.

So not on anything other than the Humulin I. I was supposed to be referred to the diabetes team at the hospital I go to for my regular respiratory appointments, but that slipped through the cracks - when I’m in there I’m usually pretty ill and I can understand why that got forgotten tbh. It’s not helping that I see the diabetes consultant at hospital C, which is tiny and really more of an old fashioned cottage hospital, my regular respiratory consultant at hospital B, which is the county hospital that I’m admitted to when ill, and my over all respiratory consultant at a centre of excellence (A) about 2 hours away. A and B talk, but C just does it’s own thing, and just doesn’t grasp that I cannot afford to be ill because it affects my respiratory condition.

Actually, writing that down gives me an idea. The unstable BG makes me more vulnerable to infections, I already have chronic lung infections I can’t shift, that might be a way of forcing the issue by getting hospital A involved.

Old fashioned pretty much sums up hospital C. It’s like being on the set of a 50’s hospital drama. Kind of feels like nobody caught up since.

 

[leonS]

If I were a betting man my money would be on you being type 1 (late onset perhaps). I would give very good odds, but I don't think I would find many takers on this site.

Old fashioned would work fine BUT you need what insulin you need and attempting to restrict it is *****. Does it make you fat? NO! It is food that make you fat. Too much insulin might enable you to eat too much food, but that is the treatment not the insulin.

Say to the Dr "I AM TYPE 1. i NEED INSULIN"then request to be referred to a specialist clinic.

If the assertion is made that you are type 2 demand that this be proved with the tests for c-peptide and GAD.

Next - as a type 1 NICE say you should test a minimum of four times a day. Four times 28 days is more than 100, so you need at least three pots of sticks a month and this only allows for a few extra tests over the absolute minimum.

The old fashioned two shot a day system will work fjne if the dose is right. A four shot base/bolus system is much better, in my view (more flexible and better control). You need two different types of insulin.

I personally would put up the prescribed insulin does, a little at a time, until I got good results, then I might tell the Dr. But do not tell anyone that I told you this!

 

[Madeline]

Late onset is what my money is on too, given my family history and the fact that there’s also nobody with Type 2.

The evening dose of basal, I’m currently taking it at the same time as dinner because nobody actually told me when to take it. Should I bring it forward by an hour?

It’s all pretty bonkers, one day I’ll be able to laugh about the ridiculousness of it all.

 

[eggyg]

@Madeline I have a similar story to you re the insulin and diabetes type. I’ve had most of my pancreas removed but the HCPs still insisted I was Type 2. Only through this forum did I realise how ridiculous that was, after five years of Metformin and being told to diet and exercise, I’m not big, my BGs just got higher and higher. I was put on Humilin I. It worked at first but,like you, carbs still needed to be restricted. After about two years I mentioned maybe bolus should be added. They agreed eventually but still wouldn’t agree I wasn’t Type 2. They wouldn’t give me C-Peptide as, their words, it would only show what was happening at the time of testing. I wore them down eventually and ended up being sent to the diabetes clinic at our local hospital. This was almost 8 years after diagnosis, the DSN there said I wasn’t type 2 and changed me to Type 1 ( I’m Type 3c really but to access the services I need I have to be Type 1). She took me off Humulin I as a basal as she said it’s more for Type 2s and put me on Levemir, twice a day. All this “ only” took 8 years! So please, please push them, you can’t sustain the diet you’re on. If and when they change your insulin needs then ask/ tell them you want to attend a DAFNE course or equivalent, this will teach you about carb counting, ratios, corrections, what to do if you’re ill and lots of other helpful stuff. Don’t give up, I didn’t! 🙂 Good luck.

 

[Madeline]

Thank you @eggyg! Your story sounds even more insane than mine, how can you be Type 2 when you’ve lost most of your pancreas! Even I can spot the basic error in that one.

I'm not going to give up, you’ve all spurred me on again, which is what I needed. All I want is to be able to eat a normal, healthy diet with the odd treat. Rolling up the metaphorical sleeves on Monday.

 

[eggyg]

Thank you @eggyg! Your story sounds even more insane than mine, how can you be Type 2 when you’ve lost most of your pancreas! Even I can spot the basic error in that one.

I'm not going to give up, you’ve all spurred me on again, which is what I needed. All I want is to be able to eat a normal, healthy diet with the odd treat. Rolling up the metaphorical sleeves on Monday.

That’s the spirit!

 

[trophywench]

Make sure you do Madeline, cos we'll all be on to you until something useful occurs. Having us lot encouraging you is one thing - but having us all nagging you is another!

 

[Madeline]

Make sure you do Madeline, cos we'll all be on to you until something useful occurs. Having us lot encouraging you is one thing - but having us all nagging you is another!

Gulp.

Promise

 

[Vicsetter]

a few points about Humulin I, which I take. it takes about 2 hrs to start working. you are not supposed to stack it, so the suggestion to take a further 4 units with dinner is a waste of time (and possibly old thinking of other insulin) , whenever I've taken a second dose it has made no difference. Are you rotating injection sites, could be your insulin isn't getting absorbed properly, especially on such a low dose. I am currently injecting 60 units reduced to 50 if I've avoided carbs in the day. I inject in the evening with my evening meal. and have a target for my fasting reading in the morning, so once you know what foods do to your bg you only need 1 strip per day (except for driving.

 

[Madeline]

Yes, rotating sites, I use a sort of mental ‘clock’ layout with my navel in the centre. I struggle with the carb effects, it seems to be affected by all sorts, stress, the heat, how I’m feeling. I’m pretty rigid with what I eat, exactly the same breakfast and lunch daily purely so I don’t have to think about it - food is fuel to me really now, unless it’s chocolate which is a thing of the past.

I can eat exactly the same thing every morning and lunchtime for a week, and have no real pattern, have attached graph - that’s me with no more than 20g carbs per meal over a month, apart from the 15, which was the sushi rice accident. The 4 was down to accidentally having a diet drink with those sugar alcohol sweeteners in it, they have an awful effect on me and the upshot was I had insulin then pretty much everything whizzed through so.