Opinions, please. Very low insulin needs

[chromaloma]

Hi. I am trying this forum to see if somebody might have anything to suggest or say, that I have not yet come by.

I use very little insulin, and that makes me unsure about everything. After finding out that it might be the lantus shooted into too little fatty tissue, I started to get anxious about taking lantus. Once I had a faulty injection with blood coming out afterwards and which also left me with a blue mark, I had trouble all day with getting sugar up, starting from 30 minutes after injecting. I now split my morning dose in two as well, injecting 3u and 4u in two slightly different spots, so that I can minimize catastrophic effect if I see blood coming out after the first injection. I am thinking about asking to try another basal insulin that doesnt work by the same crystallization method.

Male 33
61 kg
180 cm

Diagnosed t1 in 2008 at age 25.
Slow progression. Started the first months without insulin at all, then used 2-6 u novorapid for meals for several years. I had no big issues with it then, before I suddenly started to experience crashes like never before. I had a nice 1,6mmol at the store after bolusing less than normal for that meal, because I knew I was going to the store. This was utterly unpredictable to me, and after this, I started going low from just taking 1 u for meals. We concluded that I was on too much bolus insulin, and I might want to try 2 lantus morning to see if that stabilized things. My bolus needs continued being strange, and I could go hypo from a 0,5 dose novorapid, even with a 30 g dinner first. This is the current status too. I have a dexcom cgm now. It has learnt me a lot about curves and reactions to food and reactions to other activity too.

Long story short, I am now, 8 years after diagnosis, taking 7 lantus morning, 2 lantus evening, and usually somewhere between 1 and 3 novorapid through one day, which means about 12 u daily total. I shoot many 0,5s. I find this to be very little. I do want to gain weight, but I feel squeezed, as if I eat more, I will have to increase my boluses, and then I start to go occasionally suddenly hypo. Endo people just say bolus and eat, but it's just not possible without going hard low.

I have learnt that my muscles must use a lot of the glucose, but I still haven't figured out what is going on. I can experience very different needs, where I some days don't need any bolus all day with total 70-90 carbs, with fasting down in 5s, while the next day I might have 10mmol fasting, and nothing can get my sugar down.


This means I am fluctuating from an i:c ratio 1:80 to 1:10 from one day to another.

Don't get me wrong. I can go to 12-13mmol pretty quick. Problem is that I can go back from 12 to 3 in somewhere around 15 minutes. Sometimes by 0,5u, sometimes by 1u and sometimes I need to take 2 units just to keep it below 12mmol. So it's utterly unpredictable, and I simply cannot shoot 2 u before meals when I don't even know if sugar will go up from the food. Because sometimes, it is also like the food never arrived, and sugar just crash.

One thing that gets me thinking by this, is DKA. If I have this little insulin need one day, I'll be fine, but those days when I have bigger needs, I am really worried about ketones building up. This entire situation gives me creeps.

I have antibodies and my last fasting cpeptide was 0,1.

I have got a lot of mental trouble because of this, as it wears me out. I cannot be active in social life, and I don't dare to do anything, as I drop fast when doing simple things after bolusing just a 0,5u bolus.

I have been speculating a lot over in the diabetesdaily forum, and learnt some through the last years. However, I am not getting to the bottom of why I need so little insulin, why I drop so fast if I just stand up or walk around a bit, why my daily needs can change that much, but I do believe that lantus absorption issues might be some of the problem. But I don't know this, and I am going to the endo now after Easter to try to get to the bottom of my struggle towards answers and stability.

On that path, I wonder if somebody in here might have any good tip on what I can ask the endo for to get checked to find out more. Thanks.

 

[AtkinsMo]

There was a really interesting post that I read this morning but I can't find it now, it was a guy in exactly the same situation as you, who had just visited Australia and had had to start taking insulin again, now he'd got back home he had come off it again! I have a memory like a sieve and I can't remember where I saw it, I've looked, but I can't find it! I didn't comment, had no expertise in the area but it was very interesting. Does anybody know who it was to tag him? Can't remember if it was basal as well as bolus that he had stopped, BGs still okay, or just bolus! But it sounds as though it's just the practical experience /guidance / advice that you are looking for. If I come across it again I'll tag you.

 

[chromaloma]

Thank you!

 

[TorqPenderloin]

John, I post over on DD as well so I know your story better than most on here. I know that it isn't what you want to keep hearing but you need to address your mental health issues first before you can ever hope to address the physiological ones.

It sounds like you have two beautiful young children that need their father to be around and also be healthy (both mentally and physically). If nothing else, please go see a counselor for their sake.

 

[Daibell]

Hi. Yes, do seek mental health support if you feel it will help and is part of the problem. I occasionally hit a blood vessel when injecting which is annoying and can't always be avoided. What size needle do you use? I use 4mm which is increasingly common but longer may be needed if you have thick skin. It may be worth asking to be swapped to Levemir Basal? Lantus is very common and most users appear happy with it but NICE now recommends Levemir as the first choice (not sure why).

 

[Brunneria]

Have a look in the LADA section of the forum (in the list of different boards).
You may find the discussions there very useful.

 

[chromaloma]

John, I post over on DD as well so I know your story better than most on here. I know that it isn't what you want to keep hearing but you need to address your mental health issues first before you can ever hope to address the physiological ones.

It sounds like you have two beautiful young children that need their father to be around and also be healthy (both mentally and physically). If nothing else, please go see a counselor for their sake.

Hi Torq! Nice to see you here as well. Yep, I try to be there. They are my main priority.
I see the mental thing, but I am not sure what triggers what. I have used to think that my main anxiety problem is being triggered by that I don't dare to take too much insulin, because of the sudden drops I have experienced afterwards. That's why I am trying to get to the bottom of why I need so little and variable insulin, and if there is something I can do about it. Because the drops still comes if I don't have anxiety of getting it. Then I would probably take more insulin and get more severe ones.

 

[AtkinsMo]

Found the thread and the people who can help and advise from a practical perspective. @Ian DP and @LucySW - do you mind me giving you a 'shout'.

All the best @chromaloma

 

[chromaloma]

AtkinsMo, thanks

 

[LucySW]

There was a really interesting post that I read this morning but I can't find it now, it was a guy in exactly the same situation as you, who had just visited Australia and had had to start taking insulin again, now he'd got back home he had come off it again! I have a memory like a sieve and I can't remember where I saw it, I've looked, but I can't find it! I didn't comment, had no expertise in the area but it was very interesting. Does anybody know who it was to tag him? Can't remember if it was basal as well as bolus that he had stopped, BGs still okay, or just bolus! But it sounds as though it's just the practical experience /guidance / advice that you are looking for. If I come across it again I'll tag you.

It was @Ian DP I think, in his thread (see above this one).

 

[Kristin251]

Are you eating the same foods at meals and seeing different results?
At DX I started with 5 lantus and 8-12 novolog with meals. 2 years in I am taking 1/2 novolog with meals and 1 lantus however I eat the same meals at the same times each day. So my macro nutrients never change and I have found the dose that works for each meal. I ended up doing this because I too would pop up and then hypo. I got very tired of that. The way I eat now is to avoid all that. It gives me peace of mind knowing I won't hypo. At the end of the day, it's just food. I enjoy my food and have a good variety. I just have set carbs proteins and fats at each meal.
I do understand the anxiety it can cause and it can consume your life if you let it. I have a much happier fulfilling life not making food a priority but rather just a necessity. I will eat what ever I need to and not eat what ever throws things off. It is only then that I have peace of mind and can enjoy my life and family as I am not constantly worrying about my BS.

 

[novorapidboi26]

your weight may bean issue regarding your need for so little.............

what should your weight be for your height, do you know......

having a high sensitivity to insulin obviously brings with it delivery problems and hypos but looking at the bigger picture is actually good.......

it would be ideal if you went on a pump as this can give you very tiny amounts when you need it......

as others have said, getting help for your anxieties will help tremendously in your attempt to get the BG under control.....

keep talking to people on here and that will also help....

 

[T1DM2012]

Hi @chromaloma

I'm in a very similar situation, with regards to the insulin sensitivity, and mood problems so really understand the frustrations you must be going through, and the impact this has on quality of life....... Other then being female aged 36 diagnosed in 2012, in terms of weight, height, carbohydrates and insulin per day we are on the same, and I have experienced exactly the same problems as you!! Aside from the anxiety this causes, personally I really feel the insulin sensitivity can be largely responsible for the mood changes. For me mood can change so much in a day even when my meter can be reading 4 or 5 I can feel foggy and straining to concentrate, suffer extreme fatigue, especially around meals, its almost as though my body is fighting of a low, and then its like a switch turns my mood lifts and everything becomes clear again.

Reducing insulin stops all of this, but I still don't feel I have found the right combination. I am starting to accept that perhaps that is diabetes, no two days are the same. I've now reduced my carbohydrates further to about 50 grams, split my basal 6.5 units at night and 4 units in the morning and take just half a unit with each meal and feel the most stable I've felt since diagnosis. Adjusting doses with meals with such sensitivity to insulin and the unpredictability it brings has just never worked for me, and this can send you mad, it did me. I am very physically active and of muscular build, which I guess could also be contributing to the sensitivity.

I would suggest not putting so much pressure on your self to achieve perfect numbers for a day or two, dose on the side of caution - less rather then too much for a day or two if your experiencing such hypo's, and see if things settle down. Get into a routine and just stick with and perhaps keep a diary - food insulin activity, and see what patterns appear. One thing I have noticed for me is higher insulin doses with meals often result in higher post meal readings then less insulin so possibly a type of rebound reaction to too much insulin. Lower doses definitely give me more stability. I know such small doses can make you wonder why bother and at times has made me question my diagnosis. Excepting I have type 1 and that this is what works for me goes a long way in helping the mind. I took myself of insulin for a few days a while back and saw what happened, I won't be doing that again.

Seek help for your mental problems, try and make sure you find time to do something you enjoy every day, don't put to much pressure on yourself, tomorrows another day and Good Luck.

 

[Kristin251]

Hi @chromaloma

I'm in a very similar situation, with regards to the insulin sensitivity, and mood problems so really understand the frustrations you must be going through, and the impact this has on quality of life....... Other then being female aged 36 diagnosed in 2012, in terms of weight, height, carbohydrates and insulin per day we are on the same, and I have experienced exactly the same problems as you!! Aside from the anxiety this causes, personally I really feel the insulin sensitivity can be largely responsible for the mood changes. For me mood can change so much in a day even when my meter can be reading 4 or 5 I can feel foggy and straining to concentrate, suffer extreme fatigue, especially around meals, its almost as though my body is fighting of a low, and then its like a switch turns my mood lifts and everything becomes clear again.

Reducing insulin stops all of this, but I still don't feel I have found the right combination. I am starting to accept that perhaps that is diabetes, no two days are the same. I've now reduced my carbohydrates further to about 50 grams, split my basal 6.5 units at night and 4 units in the morning and take just half a unit with each meal and feel the most stable I've felt since diagnosis. Adjusting doses with meals with such sensitivity to insulin and the unpredictability it brings has just never worked for me, and this can send you mad, it did me. I am very physically active and of muscular build, which I guess could also be contributing to the sensitivity.

I would suggest not putting so much pressure on your self to achieve perfect numbers for a day or two, dose on the side of caution - less rather then too much for a day or two if your experiencing such hypo's, and see if things settle down. Get into a routine and just stick with and perhaps keep a diary - food insulin activity, and see what patterns appear. One thing I have noticed for me is higher insulin doses with meals often result in higher post meal readings then less insulin so possibly a type of rebound reaction to too much insulin. Lower doses definitely give me more stability. I know such small doses can make you wonder why bother and at times has made me question my diagnosis. Excepting I have type 1 and that this is what works for me goes a long way in helping the mind. I took myself of insulin for a few days a while back and saw what happened, I won't be doing that again.

Seek help for your mental problems, try and make sure you find time to do something you enjoy every day, don't put to much pressure on yourself, tomorrows another day and Good Luck.

Same situation. Taking less insulin gives me better control. Genarally lower than before. I too think there must be some rebound effect of taking more. The body freaks with a large amount of insulin at one time. Not at all the way nature intended. Getting insulin and food there at the same time is nearly impossible.
I too had lots if anxiety and felt like I was crawling out of my skin when I take one unit. 1/2 is so much better and as I said better bs. When I would take a current ion rise if one unit I would most often end up in tears for no reason. I couldn't wait to go to bed to end the day and the struggle. As you said too, I would k.ots of Tim,e end up being higher when taking 1 than I am now with the same food.
I am vlc, under 20, moderate protein and moderate fat. This is the only way I KNOW how much to take. Same macros at meals but I switch up fats veg and protein. One major thing that keeps me very steady is some avocado with every meal. It literally stops any spike or drop. I have tried many times to skip it but it never works.
I find it interesting you have found the same thing with less insulin. That BS is better. That anxiety nearly killed me. I couldn't imagine having to live the rest of my life that way. When I read of people taking higher doses I always wonder how they do it and feel good.
Glad I'm not alone.

 

[LucySW]

Hi. I am trying this forum to see if somebody might have anything to suggest or say, that I have not yet come by.

I use very little insulin, and that makes me unsure about everything. After finding out that it might be the lantus shooted into too little fatty tissue, I started to get anxious about taking lantus. Once I had a faulty injection with blood coming out afterwards and which also left me with a blue mark, I had trouble all day with getting sugar up, starting from 30 minutes after injecting. I now split my morning dose in two as well, injecting 3u and 4u in two slightly different spots, so that I can minimize catastrophic effect if I see blood coming out after the first injection. I am thinking about asking to try another basal insulin that doesnt work by the same crystallization method.

Male 33
61 kg
180 cm

Diagnosed t1 in 2008 at age 25.
Slow progression. Started the first months without insulin at all, then used 2-6 u novorapid for meals for several years. I had no big issues with it then, before I suddenly started to experience crashes like never before. I had a nice 1,6mmol at the store after bolusing less than normal for that meal, because I knew I was going to the store. This was utterly unpredictable to me, and after this, I started going low from just taking 1 u for meals. We concluded that I was on too much bolus insulin, and I might want to try 2 lantus morning to see if that stabilized things. My bolus needs continued being strange, and I could go hypo from a 0,5 dose novorapid, even with a 30 g dinner first. This is the current status too. I have a dexcom cgm now. It has learnt me a lot about curves and reactions to food and reactions to other activity too.

Long story short, I am now, 8 years after diagnosis, taking 7 lantus morning, 2 lantus evening, and usually somewhere between 1 and 3 novorapid through one day, which means about 12 u daily total. I shoot many 0,5s. I find this to be very little. I do want to gain weight, but I feel squeezed, as if I eat more, I will have to increase my boluses, and then I start to go occasionally suddenly hypo. Endo people just say bolus and eat, but it's just not possible without going hard low.

I have learnt that my muscles must use a lot of the glucose, but I still haven't figured out what is going on. I can experience very different needs, where I some days don't need any bolus all day with total 70-90 carbs, with fasting down in 5s, while the next day I might have 10mmol fasting, and nothing can get my sugar down.


This means I am fluctuating from an i:c ratio 1:80 to 1:10 from one day to another.

Don't get me wrong. I can go to 12-13mmol pretty quick. Problem is that I can go back from 12 to 3 in somewhere around 15 minutes. Sometimes by 0,5u, sometimes by 1u and sometimes I need to take 2 units just to keep it below 12mmol. So it's utterly unpredictable, and I simply cannot shoot 2 u before meals when I don't even know if sugar will go up from the food. Because sometimes, it is also like the food never arrived, and sugar just crash.

One thing that gets me thinking by this, is DKA. If I have this little insulin need one day, I'll be fine, but those days when I have bigger needs, I am really worried about ketones building up. This entire situation gives me creeps.

I have antibodies and my last fasting cpeptide was 0,1.

I have got a lot of mental trouble because of this, as it wears me out. I cannot be active in social life, and I don't dare to do anything, as I drop fast when doing simple things after bolusing just a 0,5u bolus.

I have been speculating a lot over in the diabetesdaily forum, and learnt some through the last years. However, I am not getting to the bottom of why I need so little insulin, why I drop so fast if I just stand up or walk around a bit, why my daily needs can change that much, but I do believe that lantus absorption issues might be some of the problem. But I don't know this, and I am going to the endo now after Easter to try to get to the bottom of my struggle towards answers and stability.

On that path, I wonder if somebody in here might have any good tip on what I can ask the endo for to get checked to find out more. Thanks.

Chrimaloma, To gain weight, up your protein a bit? Have you seen Marty Kendal's list of proteins by how much insulin they need? Really solid research, really worth looking thro.

http://optimisingnutrition.com/the-insulin-index/

And have a look thro his blog generally.

 

[chromaloma]

Chrimaloma, To gain weight, up your protein a bit? Have you seen Marty Kendal's list of proteins by how much insulin they need? Really solid research, really worth looking thro.

http://optimisingnutrition.com/the-insulin-index/

And have a look thro his blog generally.

Thanks. Looks like he is asking a lot on that blog, but without any much facts to the table. I might have to just eat slightly little more and take more 0,5 units, and also maybe eat more protein.

 

[chromaloma]

Hi @chromaloma

I'm in a very similar situation, with regards to the insulin sensitivity, and mood problems so really understand the frustrations you must be going through, and the impact this has on quality of life....... Other then being female aged 36 diagnosed in 2012, in terms of weight, height, carbohydrates and insulin per day we are on the same, and I have experienced exactly the same problems as you!! Aside from the anxiety this causes, personally I really feel the insulin sensitivity can be largely responsible for the mood changes. ...

Hi. Yes, the anxiety is very dependent on how much insulin you have to take. And also when sugar is declining slooowly but surely, that's a better feeling, than when it goes steady up. Nice to hear that someone else has the same doses of insulin as me without having to eat themselves into starvation ketoacidosis. Maybe it's just like this... The problem which causes extra anxiety is the instability, and the fact that one need so little insulin.

 

[cz_dave]

I was in a somewhat similar situation like you. I switched from Lantus to Levemir which helped. More importantly, decreasing my carb intake to ca. 50g of carbs per day did the trick. Typically, I inject 1.5 units of NovoRapid, so any miscalculation of carbs in my meal does not cause a whole lot of damage. Plus: eating more fats made me a little bit less insulin sensitive. Previously, I could hypo on a single unit. This happens no more.

 

[chromaloma]

Interesting. Did you change to levemir and start low carb at the same time, or did you have any lagtime between? What did you experience?

And what happens if you go for a short walk after bolusing 1,5u, will it crash totally?

 

[Kristin251]

I was in a somewhat similar situation like you. I switched from Lantus to Levemir which helped. More importantly, decreasing my carb intake to ca. 50g of carbs per day did the trick. Typically, I inject 1.5 units of NovoRapid, so any miscalculation of carbs in my meal does not cause a whole lot of damage. Plus: eating more fats made me a little bit less insulin sensitive. Previously, I could hypo on a single unit. This happens no more.

I wanted to lose a few pounds so cut fat and hypo'd. Then cut insulin and could still hypo. It's a very delicate balance and fat makes a big difference. I need a certain amount to stay steady and not go low. Too uch is no good and too little is no good. The type of fat matters just as much. Mayo and mostly guac work but olive oil is like water, does nothing. Saturated fat makes the biggest difference. It's such an annoying delicate balance