Panic about what to eat, starting insulin this week

[JMoli]

Hi, couldn’t sleep last night as was in a total panic about what to eat once I start on insulin. I think I’ve read too much over the space of a short time and I’m terrified of having hypos.
I have an appt on Tuesday, keen to start as soon as possible as I’m so skinny, but totally confused as to what to eat. I’ve been reading some books and ideally want to go down the lower carb/healthy fats/protein route with lots of calories. I’m happy to carb count or even eat the same food every day as I’m used to food constraints (used to have dairy issues then the FODMAP diet which was pretty restrictive, prior to diabetes) I’ve ordered the Think Like A Pancreas book - will this help guide me? I feel so lost! I also now have a fear of pasta! Is there a simple ‘eat this’ type guide/menu for the first week or so, so I’m not in a total blind panic?? Thanks!

 

[DCUKMod]

Hi, couldn’t sleep last night as was in a total panic about what to eat once I start on insulin. I think I’ve read too much over the space of a short time and I’m terrified of having hypos.
I have an appt on Tuesday, keen to start as soon as possible as I’m so skinny, but totally confused as to what to eat. I’ve been reading some books and ideally want to go down the lower carb/healthy fats/protein route with lots of calories. I’m happy to carb count or even eat the same food every day as I’m used to food constraints (used to have dairy issues then the FODMAP diet which was pretty restrictive, prior to diabetes) I’ve ordered the Think Like A Pancreas book - will this help guide me? I feel so lost! I also now have a fear of pasta! Is there a simple ‘eat this’ type guide/menu for the first week or so, so I’m not in a total blind panic?? Thanks!

Moli, I've never been down this route, personally, but from what I can gather, by reading on here, folks are often to describe their diets and blood sugars - often they have been asked to keep a food/glucose diary for a brief period, which helps the nurse/doc suggest the starting dose for your insulin.

Folks are usually in quite close contact with their health team as they'd get used to insulin. It's quite common for the doses to be a bit off at the start, as they're usually quite conservative with early suggestion.

I can totally appreciate your apprehension, but from what I've seen (again on here), folks usually start feeling much more like their old selves once their blood glucose comes somewhere close to being in line.

I'll cross my fingers for you, and don't forget there are many, many, many on here have trodden in your footsteps and will be keen to help you where they can.

 

[JMoli]

Moli, I've never been down this route, personally, but from what I can gather, by reading on here, folks are often to describe their diets and blood sugars - often they have been asked to keep a food/glucose diary for a brief period, which helps the nurse/doc suggest the starting dose for your insulin.

Folks are usually in quite close contact with their health team as they'd get used to insulin. It's quite common for the doses to be a bit off at the start, as they're usually quite conservative with early suggestion.

I can totally appreciate your apprehension, but from what I've seen (again on here), folks usually start feeling much more like their old selves once their blood glucose comes somewhere close to being in line.

I'll cross my fingers for you, and don't forget there are many, many, many on here have trodden in your footsteps and will be keen to help you where they can.

Thanks so much for your kind reply. I imagine once I’ve started I’ll feel less anxious. Some people seem to manage really well quite quickly so I’m hoping this happens but pretty apprehensive as I’ve learnt in my life in the last six months that nothing goes to plan! Feeling a bit sorry for myself, need to change my attitude I think

 

[DCUKMod]

Thanks so much for your kind reply. I imagine once I’ve started I’ll feel less anxious. Some people seem to manage really well quite quickly so I’m hoping this happens but pretty apprehensive as I’ve learnt in my life in the last six months that nothing goes to plan! Feeling a bit sorry for myself, need to change my attitude I think

It's easy for me to say, just take it one step at a time, and maybe even expect your numbers to be a bit all over the place as things settle. You'll be fine, I'm sure of it.

 

[Japes]

Hi @JMoli .

What most of us found was we were on conservative fixed doses of the fast-acting to start with until things settled and a ratio for carb counting could be established. (I was told to take 4 units with every meal and my twice-daily basal dose changed at every meeting for the first month).

I found it frustrating, as things didn't seem to be settling for about a month, and I was desperate to be carb counting accurately, and getting back to my preferred ways of eating, (which were lower carb than the nurses likes but higher than the strict low carb I'd done whilst that worked in my mis-diagnosed T2 days) but when they did fall into place they did so very quickly.

I did have to keep accurate diaries of food and doses during the first bit of time - about six weeks of weekly appointments before everyone was satisfied I was safe to go it alone with just 6 monthly appointments after that.

As to what to eat - well, I ate what I wanted, what I enjoyed, decided it was all a scientific experiment anyway, and had small portions of things like rice and pasta to determine the effect once I was let loose carb counting.

What I found more important was being prepared for possible hypos. So, having fast-acting carbs around at all times, knowing what my hypo symptoms were so I could react quickly to them, and being aware what combination of things outside my control can add to that. I work with students with additional needs - some days can be very sedentary other days can have me over 10,000 steps on campus before morning break. Those are the days I can be glugging back some full-sugar Coke before I run off after whoever's had a meltdown just in case I add a hypo to the morning's dramas. My current main one has T1, when that student is hypo it's fair to say I'm the only one in the room who doesn't panic, (everyone's pretending they aren't, but they are!) I just do what has to be done to get that student's numbers safe again and sit there with the student who doesn't really want anyone flapping.

It took and is still taking a lot of trial and error with both food and doses and things can and do change.

Good luck with the appointments.

 

[Swillbos]

Hi @JMoli,

I was re-diagnosed as LADA last year after seven years thought to be T2. At the time of diagnosis, my numbers were nearly all in the high teens, despite low carb (c.50-100g per day) and a lot of exercise. I started on basal insulin only, and am still on what (I think?) is a fairly low dose 10units Humulin a day split into two doses. I haven't yet started on bolus insulin, as my diet/exercise control was deemed surprisingly good when last reviewed. However I suspect I will need to add bolus in the next few months as I am starting to get more variation/highs. Still on Metformin btw.

In seven months of insulin I have had five hypos, all around the 3.8 BG mark and all when out exercising - I do a lot of vigorous walking (once when cycling). You do need to be prepared for these, I had got a bit blasé - but have so far found the sudden onset of dizziness/general mental weirdness unmistakeable. More often I have felt spooked I might be having a hypo only to test and realise it must have been a mild panic attack.....

As to what to eat, it's probably easiest to carry on with whatever your current normal diet is as that will let you see the impact of adding insulin to daily life. At this stage it is testing, testing testing! You can do whatever fine-tuning you want on both sides of the diet/exercise plus insulin equation through the coming months and years. This week is just your starting point on what is definitely a marathon not a sprint!!! There are many, many people on this forum with far more experience than me, who I know will gladly contribute their experience.

Main thing is to be kind to yourself, you have had a dreadful year and I hope you feel much better soon x

 

[JMoli]

Hi @JMoli .

What most of us found was we were on conservative fixed doses of the fast-acting to start with until things settled and a ratio for carb counting could be established. (I was told to take 4 units with every meal and my twice-daily basal dose changed at every meeting for the first month).

I found it frustrating, as things didn't seem to be settling for about a month, and I was desperate to be carb counting accurately, and getting back to my preferred ways of eating, (which were lower carb than the nurses likes but higher than the strict low carb I'd done whilst that worked in my mis-diagnosed T2 days) but when they did fall into place they did so very quickly.

I did have to keep accurate diaries of food and doses during the first bit of time - about six weeks of weekly appointments before everyone was satisfied I was safe to go it alone with just 6 monthly appointments after that.

As to what to eat - well, I ate what I wanted, what I enjoyed, decided it was all a scientific experiment anyway, and had small portions of things like rice and pasta to determine the effect once I was let loose carb counting.

What I found more important was being prepared for possible hypos. So, having fast-acting carbs around at all times, knowing what my hypo symptoms were so I could react quickly to them, and being aware what combination of things outside my control can add to that. I work with students with additional needs - some days can be very sedentary other days can have me over 10,000 steps on campus before morning break. Those are the days I can be glugging back some full-sugar Coke before I run off after whoever's had a meltdown just in case I add a hypo to the morning's dramas. My current main one has T1, when that student is hypo it's fair to say I'm the only one in the room who doesn't panic, (everyone's pretending they aren't, but they are!) I just do what has to be done to get that student's numbers safe again and sit there with the student who doesn't really want anyone flapping.

It took and is still taking a lot of trial and error with both food and doses and things can and do change.

Good luck with the appointments.

Thanks so much, so you had to move from a low carb diet to a full-on carb diet at the start to establish the right amounts? What happened when you got high readings? Thanks again

 

[JMoli]

Hi @JMoli,

I was re-diagnosed as LADA last year after seven years thought to be T2. At the time of diagnosis, my numbers were nearly all in the high teens, despite low carb (c.50-100g per day) and a lot of exercise. I started on basal insulin only, and am still on what (I think?) is a fairly low dose 10units Humulin a day split into two doses. I haven't yet started on bolus insulin, as my diet/exercise control was deemed surprisingly good when last reviewed. However I suspect I will need to add bolus in the next few months as I am starting to get more variation/highs. Still on Metformin btw.

In seven months of insulin I have had five hypos, all around the 3.8 BG mark and all when out exercising - I do a lot of vigorous walking (once when cycling). You do need to be prepared for these, I had got a bit blasé - but have so far found the sudden onset of dizziness/general mental weirdness unmistakeable. More often I have felt spooked I might be having a hypo only to test and realise it must have been a mild panic attack.....

As to what to eat, it's probably easiest to carry on with whatever your current normal diet is as that will let you see the impact of adding insulin to daily life. At this stage it is testing, testing testing! You can do whatever fine-tuning you want on both sides of the diet/exercise plus insulin equation through the coming months and years. This week is just your starting point on what is definitely a marathon not a sprint!!! There are many, many people on this forum with far more experience than me, who I know will gladly contribute their experience.

Main thing is to be kind to yourself, you have had a dreadful year and I hope you feel much better soon x

Thanks, that’s kind. It does sound like it’s going to take some time to get some kind of normal. I’ve been having a lower carb diet gradually over the last weeks so I’m worried I’ll get told off tomorrow! Will that make guessing the insulin amount to give me harder do you think or do they tend to give an amount based on your weight (in my case not very much!)

 

[Japes]

Thanks so much, so you had to move from a low carb diet to a full-on carb diet at the start to establish the right amounts? What happened when you got high readings? Thanks again

I didn't ever go back to full on carb. I just introduced enough to satisfy nurses who were hysterical about very low carb! I now describe as lower than they like and lower than I used to eat 5 years ago much in line with NHS guidelines. But higher than I ate in the run up to LADA.

My readings were high enough, 20s at that first clinic appointment along with high ketones that those same nurses wanted me to admit me there and then. The consultant decided to give me a week to see what happened as I had self funded test strips and had enough evidence to show what had been happening.

Within the week I was still on high numbers but much improved so I dodged the hospital admission. Bringing high numbers down too fast can cause other problems so, frustrating as it was, I lived with the slowly decreasing numbers for a month or so.

We are all very different and I'm only telling my story. Insulin was so clearly what I needed and I am happy to eat what works for me. It may not work for you!

 

[Daibell]

Hi. An important point to start with is whether you are being started on fixed shots of fast-acting insulin or adjusting them to the carbs in the meal. Many are started on fixed doses so you need to be more careful. BTW why people are started on fixed doses is a mystery to me. Test frequently and have enough carbs at each meal to avoid hypo risk. Most people are started on low'ish fixed doses so hypo risk is correspondingly low. Discuss moving over to carb-counting the dose with the GP as soon as you can as that's the best way of avoiding hypos whilst keeping BS under control. Initially keep your BS slightly on the high side to minimise hypo risk until you gain experience. For most of us the liver comes to our aid if BS goes too low and dumps glucose into the blood.

 

[JMoli]

Hi. An important point to start with is whether you are being started on fixed shots of fast-acting insulin or adjusting them to the carbs in the meal. Many are started on fixed doses so you need to be more careful. BTW why people are started on fixed doses is a mystery to me. Test frequently and have enough carbs at each meal to avoid hypo risk. Most people are started on low'ish fixed doses so hypo risk is correspondingly low. Discuss moving over to carb-counting the dose with the GP as soon as you can as that's the best way of avoiding hypos whilst keeping BS under control. Initially keep your BS slightly on the high side to minimise hypo risk until you gain experience. For most of us the liver comes to our aid if BS goes too low and dumps glucose into the blood.

Thanks, I’ll find out tomorrow how they will be starting me. Hopefully I can start on Wednesday, not sure if I will have to keep taking gliclazide? I assume not. I’ll have to write out lots of questions tonight! Do you know if the insulin will help with weight gain quite quickly? I’m really desperate to put some back on.

 

[JPW1]

I agree with Japes first post re: first few weeks, if you get started on fixed doses as i did, you'll find you need to be a bit more careful. Get your head aroubd carb counting asap, so you'll be able to see how your units of insulin deal with certain amounts of carbs.
You'll probably find that fat content will slow down digestion so much that your fast acting insulin is almost useless, i.e. Pizza is an absolute nightmare.

I have no intention of going low carb. My usual diet was about 200g, I intend to increase that a bit, but basically i eat what i want, my average blood sugar is now around 7. 2 mmol whereas in December it was 13+ and i was basically starving myself on Type 2 diet!

I am honestly delighted to be on insulin after struggling for nearly 8 years supposedly as Type 2, and loosing.

 

[JMoli]

I agree with Japes first post re: first few weeks, if you get started on fixed doses as i did, you'll find you need to be a bit more careful. Get your head aroubd carb counting asap, so you'll be able to see how your units of insulin deal with certain amounts of carbs.
You'll probably find that fat content will slow down digestion so much that your fast acting insulin is almost useless, i.e. Pizza is an absolute nightmare.

I have no intention of going low carb. My usual diet was about 200g, I intend to increase that a bit, but basically i eat what i want, my average blood sugar is now around 7. 2 mmol whereas in December it was 13+ and i was basically starving myself on Type 2 diet!

I am honestly delighted to be on insulin after struggling for nearly 8 years supposedly as Type 2, and loosing.

Thanks, I’ll let you know how it goes today. So I assume my blood sugar levels will be a bit crazy/high for the first while. I’ve been carb counting for a few weeks now on and off. I’m eating very cheese heavy meals (have had dairy issues previously and LOVING eating it again) - will this make things very difficult then? Is that the issue with pizza?

 

[JPW1]

I'm guessing cheese is the problem (along with pepperoni etc.) in pizza, but indirectly - i.e. the cheese delays the digestion of the actual carbs in the pizza. So what I'm doing is eating cheese as a snack when my other carbs have been digested - cheese itself has no carb issues. So i'll have a lump of cheese mid morning or at 8:30pm or something.

I think your BG levels will drop almost immediatly on insulin, but not to where you want them to be. I started on low doses with each meal and gradually increased, so for example breakfast/lunch/dinner was 0/2/4 for a few days, and that lowered my levels a bit, then 2/4/5 for a few days and that lowered it more, now I'm generally on 4/5/7 and that gets me to where I want to be. I'm carb counting and dosing accordingly now so those figures vary.

I'm guessing that's the approach they'll take with you as well. You might not even take insulin at every meal.

 

[Bewildered]

Hi I had my diagnosis confirmed today after blood tests taken when I was admitted to hospital with ketones. I’ve struggled to try to manage my ‘type 2’ for 5 years and recently dropped two dress sizes in 6 weeks. I started to look like a skeleton. I started insulin when I went in to hospital, initially long acting and now rapid at meal timed and I’ve put on the weight I lost so quickly. My advice is listen to what the nurse specialists tell you and try to eat a healthy balanced diet while you get your strength back and then think about whether you will restrict your carbs once you have more information. I resisted starting insulin as I was supposed to be type 2 and worried about hypos as I have to drive so much for my job. But actually I feel so much better now, and my readings were late 20’s. I was advised to aim for 9 and 10 readings to begin with, reducing the risk of taking it so low that I might miscalculate and have a hypo. Good luck !

 

[Outlawe]

Hi, couldn’t sleep last night as was in a total panic about what to eat once I start on insulin. I think I’ve read too much over the space of a short time and I’m terrified of having hypos.
I have an appt on Tuesday, keen to start as soon as possible as I’m so skinny, but totally confused as to what to eat. I’ve been reading some books and ideally want to go down the lower carb/healthy fats/protein route with lots of calories. I’m happy to carb count or even eat the same food every day as I’m used to food constraints (used to have dairy issues then the FODMAP diet which was pretty restrictive, prior to diabetes) I’ve ordered the Think Like A Pancreas book - will this help guide me? I feel so lost! I also now have a fear of pasta! Is there a simple ‘eat this’ type guide/menu for the first week or so, so I’m not in a total blind panic?? Thanks!

Hi - Hope that your appointment went well and that things are starting to fall into place - there's a lot of new things to learn. Your Diabetes Nurse will help you with the calculations for insulin to carbs. The resources on this website are a really good starting place. I found the Think Like a Pancreas book really helpful. The other good one is Carbs and Cals. You don't have to follow a 'restricted' diet but understanding carbs/sugars and general nutrition is definitely the key. Sounds like you are already good with this even though it currently feels like a panic.

 

[donnieboy]

Hi, couldn’t sleep last night as was in a total panic about what to eat once I start on insulin. I think I’ve read too much over the space of a short time and I’m terrified of having hypos.
I have an appt on Tuesday, keen to start as soon as possible as I’m so skinny, but totally confused as to what to eat. I’ve been reading some books and ideally want to go down the lower carb/healthy fats/protein route with lots of calories. I’m happy to carb count or even eat the same food every day as I’m used to food constraints (used to have dairy issues then the FODMAP diet which was pretty restrictive, prior to diabetes) I’ve ordered the Think Like A Pancreas book - will this help guide me? I feel so lost! I also now have a fear of pasta! Is there a simple ‘eat this’ type guide/menu for the first week or so, so I’m not in a total blind panic?? Thanks!

I have been on insulin for 30 years and at first it was a bit daunting. I was afraid to eat anything. That isn't an option, of course. The key in my case has been to eat anything I want - just not the quantities I want. The effect has been to educate me as to the carbohydrate count in everything. A burger? The bun is roughly 30 grams of carbs so that dose is 8 units of insulin. Add fries and the number goes up. Add a milk shake and...well, don't add the milk shake. So in my case it was not about what I ate but how I dosed to compensate. The long-term effect has been somewhat beneficial and very educational. You find out very quickly that breakfast cereals (at least in the states) is a horrid thing to eat. Things like that.

It's a lifestyle adjustment, not a long-term punishment. BTW, you will probably add some weight short term. I gained 30 lbs in one month after my new endocrinologist adjusted my insulin. It was awesome as I was always underweight.

 

[JMoli]

I have been on insulin for 30 years and at first it was a bit daunting. I was afraid to eat anything. That isn't an option, of course. The key in my case has been to eat anything I want - just not the quantities I want. The effect has been to educate me as to the carbohydrate count in everything. A burger? The bun is roughly 30 grams of carbs so that dose is 8 units of insulin. Add fries and the number goes up. Add a milk shake and...well, don't add the milk shake. So in my case it was not about what I ate but how I dosed to compensate. The long-term effect has been somewhat beneficial and very educational. You find out very quickly that breakfast cereals (at least in the states) is a horrid thing to eat. Things like that.

It's a lifestyle adjustment, not a long-term punishment. BTW, you will probably add some weight short term. I gained 30 lbs in one month after my new endocrinologist adjusted my insulin. It was awesome as I was always underweight.

Thanks! I‘ve had yet another delay but starting on Monday (definitely this time I hope!) with one low insulin injection a day - still not sure if the terminology! I’m to stay on the gliclazide (worries about hypos but that’s what they have decided for me) and they said that they would keep an eye on my numbers. I’m desperate to get started now and that is the BEST news about putting weight on quickly - thank you so much! I’m having to get dressed and shower with my eyes closed because I’m so skinny but have managed to put some weight back on after going rogue and being low carb when I wasn’t supposed to be. I’m gradually accepting it’s a different lifestyle but not the end of the world

 

[Waterfall 888]

Thanks! I‘ve had yet another delay but starting on Monday (definitely this time I hope!) with one low insulin injection a day - still not sure if the terminology! I’m to stay on the gliclazide (worries about hypos but that’s what they have decided for me) and they said that they would keep an eye on my numbers. I’m desperate to get started now and that is the BEST news about putting weight on quickly - thank you so much! I’m having to get dressed and shower with my eyes closed because I’m so skinny but have managed to put some weight back on after going rogue and being low carb when I wasn’t supposed to be. I’m gradually accepting it’s a different lifestyle but not the end of the world

Hi
I lost a, lot of weight after diagnosis was thin to start with. Then ate what I wanted and put weight back on eating hospital food. I have dairy and wheat intolerances and chronic acid reflux so had to listen to my body when I got home. I started a low carb diet with meat, veg, eggs, roasted nuts, dairy free milk and cheese. I lost some weight initially but ate more healthy fats salad dressings, butter, lots of nuts and cheese, avocados. Am looking healthy these days. This diet stopped hypos during the day my bs was always going on the low side. I eat toast 11g before bed to prevent an overnight hypo. Am in the honeymoon so not background insulin just low doses of fiasp when I eat. I guess I could give more insulin and eat more carbs but not ready for that yet to manage high bs before getting dose right. I read for Lada if your pancreas is still working not matter how low a percentage. you can keep it working and possibly produce more beta cells if you stick to low carb. I am interested to see how low carb changes my hb number. Next test is June. Good luck with your diet. I had days recently with the panic of what to eat. I totally get how you feel. One day at a time. Be kind to yourself they keep telling me at the clinic.

 

[JMoli]

Hi
I lost a, lot of weight after diagnosis was thin to start with. Then ate what I wanted and put weight back on eating hospital food. I have dairy and wheat intolerances and chronic acid reflux so had to listen to my body when I got home. I started a low carb diet with meat, veg, eggs, roasted nuts, dairy free milk and cheese. I lost some weight initially but ate more healthy fats salad dressings, butter, lots of nuts and cheese, avocados. Am looking healthy these days. This diet stopped hypos during the day my bs was always going on the low side. I eat toast 11g before bed to prevent an overnight hypo. Am in the honeymoon so not background insulin just low doses of fiasp when I eat. I guess I could give more insulin and eat more carbs but not ready for that yet to manage high bs before getting dose right. I read for Lada if your pancreas is still working not matter how low a percentage. you can keep it working and possibly produce more beta cells if you stick to low carb. I am interested to see how low carb changes my hb number. Next test is June. Good luck with your diet. I had days recently with the panic of what to eat. I totally get how you feel. One day at a time. Be kind to yourself they keep telling me at the clinic.

Thanks, I’m confused about lower carb as my nurse seems really anti LC but it’s something I do want to do once I’ve put weight back on. I’m to start on background insulin I think, and carry on taking gliclazide which I would prefer not to do. It’s a bit of a balancing act just now as I’m so skinny and have such a fast metabolism