Rather not eat than take insulin

[ExtremelyW0rried]

I've been diabetic for 24 years and I think the newer fast acting insulins are scary compared to the mixed insulins I had when I was diagnosed.

I have a pump and find my basals are ok as I don't go low or high really. Unless I eat. I find my blood sugars are wildly unpredictable if I eat. Eating the same thing one day to the next can cause me to be low / high just depending on what my blood sugar feels like doing. My ratio is about 1:40 so my margin for error is pretty tiny. Consequently these last few months I've been barely eating. I'd rather not eat than take bolus doses. When I am eating it's tiny amounts so I'm only having to have 0.2u at a time. I've lost nearly two stone and my bmi is down to below 18.

What do I do about this? I'm scared of insulin. I'm scared that sometimes 0.3 units can drop my sugar from 12 to 3 in an hour and other times do absolutely nothing. How do I know when it's going to do nothing vs when it's going to drop me like crazy? Since I got pregnant and had my daughter my sugars have never been predictable. My dsn is no help as she just says if my carb ratios are correct it won't happen. She is wrong. Same food, same time, same dose, different day can result in wildly different outcomes.

I'm at my wit's end and it's making me feel like I don't want to carry on.

 

[ketondaddy]

Hi there. I would say that try to take it easy as you know stress can cause your blood sugar rise especially Also try to eat more fat and less carb and see how your body reacts to it. You have to put weight on anyway. It might be some excercise or alcohol consumption have some backlash on your bloodsugar? That takes up to 48 hours to cause your blood glucose drop. Keep strong and carry on , please!

 

[paulus1]

different insulin. can you be hyper sensitive to insulin you really need a good consultant not a nurse, can you be made less sensitive i dont know but that small a dose should not crash you.

 

[catapillar]

Maybe have a look at the diabetics with eating disorders forum? Tagging @asortafairytale a DWED moderator to look in and offer some advice on this.

 

[lucylocket61]

I am not a type 1, i know little about type 1. However, my female type 1 friend was saying last week that her monthly cycle and contraceptive pills can make her blood sugars go haywire. Just a small thought perhaps?

I will bow out now and leave things to the experts.

 

[ExtremelyW0rried]

I don't drink and I don't exercise much really apart from walking and a bit of swimming but nothing too strenuous.
I am more sensitive to insulin at some points of the month than others, that is true.

I have been in the position more than once of correcting a sugar of around 12/13mmol with 0.3u and an hour later been around 3mmol and still dropping and it is terrifying. I assume my basals are ok because if I don't eat anything I'm fine - my blood sugars sit around 5-7mmol.

 

[ExtremelyW0rried]

I only take very low basals doses too. Overnight two hours I take zero insulin and four hours I take 0.15 of a unit.

 

[catapillar]

I believe I've asked you this before - http://www.diabetes.co.uk/forum/threads/it-is-impossible-to-carb-count.126861/m- but have you, and your father, had antibody testing for a confirmed type 1 diagnosis? If not, have you looked into to MODY testing?

 

[dancer]

It may be totally irrelevant, but have you been tested for coeliac disease?

During my 2nd pregnancy my blood sugars were all over the place. Just like you, eating the same things on 2 different days, had different outcomes. I put it down to hormones. When it continued after my daughter was born, I blamed hormones again, as I was breast feeding. Things didn't change over the years. In one way or another, I was blamed. It was only when my HbA1c crept up to 8.3 that they decided to do something (after I pushed for some help) and I eventually managed to get the pump.

When my daughter was in her late 20s I got a diagnosis of coeliac disease, after being tested at my annual review (my first ever CD test). My gastroenterologist consultant told me I'd had CD for a long time, but not from childhood. I am convinced that CD started around the time of my 2nd pregnancy and this was the reason for the change in my diabetic control. I've been told this is a possibility but there's no way of knowing for sure.

I can understand your fear of bolussing for food, not wanting to go high or low. Have you tried the low carb high fat diet? At least you'd be eating something! If your blood sugar rises due to protein, you can give a tiny amount of insulin.

What you don't want is to develop an eating disorder, so please be careful!

 

[ExtremelyW0rried]

No one will check me. The consultant I've seen for years left and there's now like a stand in non-permanent one who didn't even seem to know what MODY was and said it was basically pointless checking as I was clearly type 1 based on the fact I was diagnosed in adolescence.
I think it's all the same to the NHS and they don't want to spend money on tests they don't think are necessary. I could pay privately but I don't know how I'd go about it.

 

[catapillar]

No one will check me. The consultant I've seen for years left and there's now like a stand in non-permanent one who didn't even seem to know what MODY was and said it was basically pointless checking as I was clearly type 1 based on the fact I was diagnosed in adolescence.
I think it's all the same to the NHS and they don't want to spend money on tests they don't think are necessary. I could pay privately but I don't know how I'd go about it.

The reason I ask is your very low insulin doses. The treatment for MODY isn't insulin, it's sulphonyurea. So it seems worth looking into. As mentioned before, there is no point doing genetic testing for MODY if the type 1 diagnosis is confirmed with positive antibody testing. The antibody testing isn't a particularly expensive test but it does take 4-6 weeks.

 

[dancer]

I don't drink and I don't exercise much really apart from walking and a bit of swimming but nothing too strenuous.
I am more sensitive to insulin at some points of the month than others, that is true.

I have been in the position more than once of correcting a sugar of around 12/13mmol with 0.3u and an hour later been around 3mmol and still dropping and it is terrifying. I assume my basals are ok because if I don't eat anything I'm fine - my blood sugars sit around 5-7mmol.

I was told only to correct at meals, because I was going hypo after correcting between meals.

 

[phdiabetic]

Ok first of all you should consult your doctor about this since they know your medical history best and so they can give you the most relevant and safest advice.

If you wanted to start eating more carby food, then start small. Just eat 10-15g at a time, bolus appropriately according to your insulin to carb ratio (talk to your doctor if you are unsure of this), don't do any exercise before or for at least 2-3 hours after your meal (depending on the time insulin lasts in your body), and test frequently (every half an hour if you are very worried, plus whenever you feel funny). Eat something you've eaten plenty of times before, because things are more likely to go wrong if you're eating a new food you don't know the carb count for, or you're not sure how your body will react.

 

[ExtremelyW0rried]

Would coeliac disease have other symptoms too or could it just cause unpredictable blood sugars?

Even things I've eaten lots of times can wildly differ in results for no reason.
I can eat one piece of toast and take 0.2u with it and one day be 5mmol after, another day be 16mmol after and another day be 3mmol after. There is no pattern to this at all. It's just random. I have to accept that some days it will be high afterwards because I cannot risk taking extra insulin in case it's a day I'm going to be low. Basically it's easier just not to eat.

My total daily dose is about 14-16u but I'm not eating so that's nearly all basal dose. My dad however is on closer to 200u so I'm not sure we would fit MODY either?

I am extremely fed up.
My dsn just basically says if it's not happening how it's suppose to be then I'm doing something wrong but I've been at this for nearly 25 years and my a1cs are always between 6-7 so it's not like I've ever been wildly out of control and don't know what I'm doing. I find her to be quite patronising to be honest. Her answer was a DAFNE course but it's not that I don't know how to carb count and dose adjust - it's that the results are so wildly different day to day.

 

[dancer]

You can have symptom free coeliac disease. Rightly or wrongly, I thought that my inconsistent blood sugars must have been due to food being absorbed by the gut differently, on different days.

My total daily dose of insulin is around 22 units with my basal being 12.05 units. My average carb intake is around 98g. I only give corrections at mealtimes unless there are ketones too.

Your DSN should listen to you properly. I think that we get blamed when we don't fall into a particular category. The professionals don't understand what's going on, so we must be doing something wrong.

 

[slip]

I have been in the position more than once of correcting a sugar of around 12/13mmol with 0.3u and an hour later been around 3mmol and still dropping and it is terrifying. I assume my basals are ok because if I don't eat anything I'm fine - my blood sugars sit around 5-7mmol.

Could that 12/13 be a result of a hypo rebound? so correcting it might not be the best practice. Almost guaranteed your Liver will grab back the glucose just after you've injected/pushed the button to correct if it is a rebound high. And hey presto the rollercoaster just keeps on going.

 

[ExtremelyW0rried]

No I have a libre so I can see the patterns. Sometimes it drifts upwards of its own accord of an evening (not every evening, maybe once every couple of weeks) and if I correct it sometimes (not every time) it will then vertically descend. I check it with my blood meter too so I know the libre isn't wrong. It drives me crazy. Then I'm up all night with it.

 

[novorapidboi26]

Her answer was a DAFNE course but it's not that I don't know how to carb count and dose adjust - it's that the results are so wildly different day to day.

You're right, DAFNE relies on patterns to make changes.....

Have any digestion issues been investigated.....What are your insulin/carb ratios like....?

 

[TheBigNewt]

You say you've been Type 1 for 24 yrs, since adolescence with good control for the most part. What insulin regimen did you follow for the bulk of that time period? I know you're on a pump now, but that doesn't sound "like your cup of tea" (to borrow an English phrase I'm fond of). When did you switch and why? What's the insulin in the pump? Maybe a few more details about your situation and history would be helpful to the commenting group.

 

[Juicyj]

Hello @ExtremelyW0rried If it's any consolation at all, my libre graphs each day do not look the same, I pretty much eat the same thing every day, so toast for breakfast, nuts to snack on, soup for lunch, then a snack of olives/cheese for mid afternoon and evening meal - some mornings I don't spike with toast above 9 then the next I can drift upwards to 14mmol/l, I try to pre-bolus before meal times by up to 20 mins too, some days I exercise, then there's female hormones to factor in, some days contain more stress than others, and it's these variables I cannot control, i've done DAFNE so do keep a close eye for patterns, but as no 2 days are the same it's hard to counter changes to match, what does strike me though is the effect of stress on the body and if you can find ways to reduce this then you can improve your insulin resistance.