Thoroughly Confused

Tahero

Active Member
Relationship to Diabetes
Type 1.5 LADA
Pronouns
She/Her
18 months ago I had eye surgery for thyroid eye disease as I was losing my sight. I also had graves disease which was treated 18 years ago with RAI knocking it under active. 3 months after surgery of which I had been on intravenous steroids and high oral doses of prednisolone I was found to have blood sugars in the 20s after going to the drs with the usual symptoms. Thirst etc etc. The Dr then tested me for anti-gad antibodies of which it came back in excess of ^2000. I was diagnosed with LADA , though I pointed out I had had no problems before surgery etc.
I was started on Lantus 11 units and novorapid 2 units with each meal. It became apparent that as I naturally have always eaten low carb , that the novorapid was too heavy. I now manage it literally with 7 units of Lantus and I walk after I have eaten, or as long as I don't stay sitting then my blood readings don't tend to raise much. (As in they always stay with the range of 0-10, and are always back to about 6 within two hours of eating) If I eat higher carbs then yes , it does raise, but for me personally I feel better using diet and exercise and not using the bolus insulin. Plus if I do as soon as I move it crashes into hypo, and then it can take me a long time to even get it back above 4 where it keeps dropping, therefore I ditched the bolus and eat low carb, or higher slightly if about to do lengthy walk etc.
I'm just a bit confused as to why they are saying it is LADA when I also have extreme thyroid issues which as far as I'm aware can also produce high fad antibodies, and this 'suddenly appeared' after the steroids..I had only had a diabetes test two weeks before surgery and it was well within range.
The drs keep telling me I can eat higher carbs and use novorapid , but my argument is if I eat lower carbs, and diet and exercise alongside basal can keep it in range what's the problem, and why are insulin needs going backwards if its LADA? Could it be type 3e instead?
I know some of you on here have many years experience so just racking your brains really as.im thoroughly confused.
Also always High fitness level as it went hand in hand with my job.
 
Did they test for all the Type 1 antibodies @Tahero ? Usually Type 1 is diagnosed if a person has two or more of those antibodies. I believe the other antibodies are more specific - eg I had GAD antibodies but also had IA2 antibodies, which are something to do with the islet cells.

If you were only diagnosed with Type 1/LADA a year or so ago, then it’s very possible you’re still in the honeymoon period. Also, with regard to your comment about dropping a lot of you eat some carbs and have the Novorapid and do light exercise, my guess is that that’s because some of your basal is mopping up your meals - ie if you were to eat normally, your basal might have to be reduced because you might well be on a higher dose than you need due to the basal having to manage your meals too. In the absence of carbs, our bodies make glucose from protein, and our livers can also pump out glucose in the absence of carbs.

Most people find Type 1 easier to control with carbs. A very low carb diet can cause insulin resistance and glucose release from protein is unpredictable. Also, it’s easier to get a wide range of nutrients IMO. In addition, eating normally is less faff and more flexible. Insulin is our friend not our foe.

As I’m sure you know, Graves’ Disease is autoimmune and having one autoimmune disorder put you at risk of others. I do understand your thoughts about the steroids. If you want to find out more, you could ask more details about your antibodies tests and ask the few questions you have. I wouldn’t worry about your low dose of Lantus. I’ve had Type 1 more than 30 years and take 6 or 7 units of basal a day, depending on my needs.
 
Thanks for your reply Inka. Do you use bolus as well with your meals? I very much sway between should I eat higher carbs , and use the bolus.....or stick with what I'm doing? I find it very strange that you use the bolus and then have to carb up again to be able to go out for a walk? It seems completely and utterly illogical?
 
Yes @Tahero I’m very sensitive to insulin so only take small bolus doses with my meals. I’ve tried low carb before and found control harder (it felt like I was constantly fighting sugars drifting high). It also caused insulin resistance - ie my mealtime insulin to carbs ratios were higher.

IMO, the easiest thing is to eat a normal healthy diet and use the insulin to control things, just as your body did before things went pear-shaped. I eat cereal, bread, potatoes, pasta, rice, cakes, desserts - I just have to ‘be my own pancreas’ and use my insulin appropriately to cover the food.
 
I think what it is Inka....I'll be honest here as you obviously don't know me. When I eat the normal food, and everything shoots up...I have heart failure. (Not literally obviously!) And then panic.
I have a teenage history of eating disorders as I was a professional dancer in London, ( not saying that all professional dancers have eating disorders but I was one that did) and thought I'd left it behind, but it still completely freaks me out when everything rises and then suddenly drops if I move.
I am told I have a logical brain....bit there is nothing logical about how this works is there?
Thank you for your reply.
 
Hi @Tahero

My consultant used to remind me regularly ‘You need what you need’. If you are finding that 2 units of Novorapid is too much, then you need less. If you find that by walking off the carbs that you have eaten is working for you without insulin then that is what you need.

In the honeymoon period it is weird, as your pancreas will be producing some insulin but not always when you expect it too. It is good that they have picked up your diabetes, and the term LADA simply means that you have developed Type 1 but later in life (like many of us on here - I was 53 at diagnosis) Many HCPs just refer to it as Type 1.

Your team will have started you on fixed doses initially whilst they work with you to adjust this to suit you. You should be able to eat whatever you choose to. I went through a patch of getting confused when I ate extremely low carb meals as for me these were then high in protein. In the absence of carbs my body then needed to use the protein to make some glucose for me, and that meant me injecting for that instead. Another lot of calculations and things to remember. So I upped my carbs again. I still get caught out on occasions when I have a very low carb meal.

Your diabetes will be different from anyone else’s, but there is plenty of help available on here to answer any questions that arise. Just ask. Then take from that what you need. Use your team to help you if you are unsure.
 
Hi @Tahero

My consultant used to remind me regularly ‘You need what you need’. If you are finding that 2 units of Novorapid is too much, then you need less. If you find that by walking off the carbs that you have eaten is working for you without insulin then that is what you need.

In the honeymoon period it is weird, as your pancreas will be producing some insulin but not always when you expect it too. It is good that they have picked up your diabetes, and the term LADA simply means that you have developed Type 1 but later in life (like many of us on here - I was 53 at diagnosis) Many HCPs just refer to it as Type 1.

Your team will have started you on fixed doses initially whilst they work with you to adjust this to suit you. You should be able to eat whatever you choose to. I went through a patch of getting confused when I ate extremely low carb meals as for me these were then high in protein. In the absence of carbs my body then needed to use the protein to make some glucose for me, and that meant me injecting for that instead. Another lot of calculations and things to remember. So I upped my carbs again. I still get caught out on occasions when I have a very low carb meal.

Your diabetes will be different from anyone else’s, but there is plenty of help available on here to answer any questions that arise. Just ask. Then take from that what you need. Use your team to help you if you are unsure.
 
Thank you. I think I've got it sussed and then it seems to change again. I think I'm just tired of walking every meal off every day. Literally of going out after every time I eat and doing a trek? Sometimes is fine, but three times a day can be a bit ....don't know how to describe it. I also have my face taped up on the right hand side at the moment where the last eye surgery hasn't worked. Its been taped up for 18 months.
If I was a horse.....
 
I think what it is Inka....I'll be honest here as you obviously don't know me. When I eat the normal food, and everything shoots up...I have heart failure. (Not literally obviously!) And then panic.
I have a teenage history of eating disorders as I was a professional dancer in London, ( not saying that all professional dancers have eating disorders but I was one that did) and thought I'd left it behind, but it still completely freaks me out when everything rises and then suddenly drops if I move.
I am told I have a logical brain....bit there is nothing logical about how this works is there?
Thank you for your reply.

I completely understand @Tahero I had an ED too. It does make it hard as Type 1 is all about thinking about the food. EDs never really go away but I’d say mine is pretty firmly under my thumb now. What helped me was transferring my thinking from calories to carbs and putting my mental energy into how to fit in lots of nutrition and regular meals. So, my brain is thinking about timings, looking forward to meals and snacks, not stuck in that horrible ED place wrestling with food.

A diabetes diagnosis can absolutely be triggering if you’ve had an ED. All I can say is to be on your guard about that kind of thinking because it can lead you back into a nasty place. It’s the ED talking. Ignore it and put your focus elsewhere. Actively sabotage its attempts to derail you. If that means starting off with tiny amounts of carbs, then do that and build up very gradually.

If the Libre is triggering you too, then fingerprick. It can be a good mental break. Rises after meals are normal. Once you’ve got a better eating regime established, you can smooth those out a bit, but they’re not anything to panic about. Type 1 is always a work in progress and perfection is impossible. Don’t let the ED use the diabetes as a weapon against you xx
 
Your first sentence applies to everyone with diabetes - we all start thinking we've got it sussed and things change again! There's a list somewhere of the approx 40+ things that can affect diabetes management - female hormones being just one of them. Blokes don't have noticeable female hormones though they do have them, same as us ladies have male ones - just depends on which are more dominant...... and - sorry to say this but - you are at a bit of a 'funny age' hormone wise aren't you - menopause and all that jazz. Men with diabetes usually put all these odd things down to what colour socks they put on this morning as they don't (naturally!) ever consider their hormones like ladies have to - even though natural human insulin itself is a ruddy hormone!

You and lots of the members here never try to control our diabetes as trying to control it only leads to failure - so instead, like most of us here, attempt to manage yours instead.
 
Thank you. I went through the menopause at 33, and now 48, but there perhaps maybe certain things still going on. I think its the rises after food that completely freaks me out particularly if it goes out of range (above the 10 mark) I have the libre 2 monitor which is great, and though they say don't take any notice to the one and a half/two hours after meals it's a bit hard not to isn't it? Thank you for your replies. You are all very helpful. X
 
anti-gad antibodies of which it came back in excess of ^2000. I was diagnosed with LADA ,

Ask them to test again, antibodies come and go and don't neccessarily mean you have diabetes.
 
Hi and welcome from me too.

If you followed a low carb way of eating before diagnosis and you are comfortable continuing with that and it works for you in other ways, then it is just a question of learning how to use your insulin to make it work for you again and no, you should not have to go out for a trek after every meal, but learning how to dose for it and when to reduce the dose to account for intended exercise (many people here cut their calculated bolus by 50% before exercise, as oppose to doing compulsory exercise each time you eat to bring levels down.
I follow a low carb way of eating but I just jab more insulin after my meal to deal with any protein release which usually starts to happen about 2 hours after a meal. It means more injections but I actually find it easier to manage rather than harder as most people suggest, particularly now we have CGM like Libre, because I just keep an eye on my levels after a meal and if they start to drift upwards I inject a bit more insulin. Generally, I inject some before the meal for the few carbs I eat and then some 2-3 hours later when the protein starts to take effect. I don't weight or calculate carbs or protein, I just guestimate what I will need and being low carb, I can't be more than half a unit out.

Question.... Do you have a half unit pen for your NovoRapid? And a half unit pen for your Lantus for that matter? With small doses, having the ability to fine tune is really important.

I too wonder if your Lantus may be covering some of your protein release. Equally, you may just be walking the protein release off or a combination of both.

The key with being an insulin dependent diabatic is to learn to make your insulin work for you and not be frightened of it. You have to factor in a lot of things as there are something like 42 factors which impact your insulin needs and whilst food and exercise and medication are the 3 big hitters, there are lots of other factors like hormones and ambient temperature and illness and stress and sleep etc. which play a part, sometimes quite significantly.... hormones particularly can make things challenging.

Something else to consider is the insulin that you are using. Different insulins have different profiles and so one particular insulin might suit you better than another or even taking it at a different time can make a difference.
For instance, your Lantus..... When do you take it? Lantus generally lasts just under 24 hours and has a peak of activity about 5 hours after injecting. It can be injected as a single dose or split into 2 doses to achieve the best coverage for an individual and the time you take those doses can be relevant and the doses don't have to be an even split. I take Levemir which is similar but specifically designed to be split into two doses and is generally considered to be the most flexible basal. I can change my doses on a day by day basis to help manage the days when I do more or less exercise or more specifically the nights after I do more exercise as that is when I have problems with hypos. I need a lot of Levemir in the morning at 18-24 units but just a small amount in the evening of up to 5 units but often none at all. Being able to adjust my basal according to what experience tells me I need is extremely important for me and I abolutely love Levemir for this. Other basal insulins like Tresiba are very, very long acting (about 36 hours) and give a very flat profile with each dose every day topping up the previous dose. This works well for people who have a more uniform basal insulin requirement (ie about the same day and night) and not much variability. If you are female, then Tresiba may make things more challenging at different times of the month too as it needs about 3 days for any changes to become effective.

Bolus insulins also have different profiles although a little less variation. I started on NovoRapid, but changed to Fiasp which has a faster action but shorter duration. The changeover wasn't easy and it took e 2 x 3 month trials to learn how to make it work for me but it was worth the change. Another member recently changed to Lyumjev (another faster acting insulin) after many many years of using Humalog. The change was forced because she could not obtain Humalog and she was really unhappy and worried about changing, but she finds the Lyumjev absolutely wonderful and her diabetes management has improved enormously just from that one change and she has many many years of experience. So these things can all make a significant difference.

I learned about all this stuff here on the forum, so I am pleased that you have come here as I am confident that you can pick up some really useful info too, but diabetes is very individual and carefully experimenting on yourself is the key to good diabetes management and learning how to use your insulin or try new insulins to suit your lifestyle and tastes and routine. It takes time and trial and in some cases error, but worth it when things start to become more manageable.

You mention that you take a long time to recover from hypos when you have them. Are you relying on a CGM like Libre or are you finger pricking to check your recovery? Libre will typically take much longer to show your levels coming back up after a hypo which is why we are advised to finger prick 15 mins after taking a hypo treatment to check recovery. Also, what are you using to treat hypos? Hopefully fast acting carbs, but are you aware that solid hypo treatments like jelly babies or glucose tabs are best chewed really well as the glucose absorbs quicker through the cells inside your mouth than in your stomach, plus your mouth is closer to your brain, and if you are taking hypo treatments after a meal, if you swallow it quickly, it can sit on top of the food that is digesting and delay it further, so chewing really well and giving it the chance to absorb through your mouth is a better option, but don't rely on a sensor to assess recovery and don't rely on how you feel to assess recovery. I find that hypos themselves are not difficult to deal with but the adrenaline release if I go too low, gives me horrid shakes and sweating and heart pounding even when my BG has come back up, so if went by my CGM or the way I felt I would almost certainly overtreat hypos every time, whereas doing a finger prick test will help you to manage it much better.

Also, what do you have your low alarm set at? Most of us have it set above 4 to give us the opportunity to prevent hypos. Mine is 4.5, but there are many people here who set it higher at 5 or even 5.6. Again it is important to find what works for you as an individual. I tried higher but had more hypos because I ignored it and it didn't go off again once I was below that level. On a low carb diet using Fiasp, my high alarm is set at 9.2 and that generally gives me time to prevent going above 10. This level would likely not work for anyone on a normal diet, where they might be tempted to inject more insulin when the alarm went off, but for me, it usually tells me that the protein is releasing and I need to hit it with some more Fiasp.

The key thing with diabetes is to only change one thing at once and leave it for a few days to see how that change works out. If it is better, then adopt it, if worse, go back to the drawing board and try something else and make small changes and look for trends in the direction you want to go.

Also wanted to mention that timing of bolus insulin is as important as the dose. If you are using insulin and then significantly spiking after meals, the chances are that you didn't take your insulin far enough ahead of the meal. Slowly increasing the prebolus timing by a few minutes each day will help the spike to come down and you need to find the timing that works well for you, for that time of day and in some cases that meal. I needed as much as 75 mins before eating breakfast with Novo(not so)Rapid to prevent me spiking up to 15mmols every morning even on a low carb diet, but only 20-30 mins at other times of the day. I should say that 75 mins is really extreme and most people would hypo in that time scale, but you have to slowly and carefully experiment to find the timing that works for you.
Just wondering if you are seeing rises after meals and then panicking and heading out for a walk to bring them back down and then of course hypoing because you didn't factor in the exercise, when just adjusting when you inject the insulin would sort the problem, with no need for the walk, but if you wanted to walk then you would also need to reduce the bolus.

This may all seem incredibly complicated especially when you are newly diagnosed, but slowly you can learn these different tricks and techniques to enable you to use your insulin to mostly balance things. We all get it wrong from time to time though so hypos still happen occasionally and sometimes we get a whopper of a spike, but you learn to accept that is part of the challenge.
I remember the time I went to the cinema after a meal with my friend a few years ago. I ate low carb and bolussed accordingly, but sitting in the cinema afterwards and watching a very intense movie which caused me to be very anxious resulted in my levels shooting up to 17mmols.and needing masses of insulin corrections to bring it down. (Combination of not bolussing far enough in advance for the meal, sitting very still afterwards and the stress caused by the film being very tense)

AS regards your diagnosis, I think it is most likely Type 1 rather than Type 3 because your antibody tests were positive and you have other autoimmune conditions and perhaps triggered by the trauma of the surgery or perhaps the steroids put your beta cells under pressure and that triggered your immune system to attack them. Knowing which antibody tests were done may help resolve it in your own mind, but either way, the important thing is to learn how to make your insulin work for you rather than adapting your lifestyle to reduce your need for it. You may not always be in a position to walk afterwards, so you really need to find strategies with your insulin which manage it, just like your pancreas did before it lost that ability.
 
Hi and welcome from me too.

If you followed a low carb way of eating before diagnosis and you are comfortable continuing with that and it works for you in other ways, then it is just a question of learning how to use your insulin to make it work for you again and no, you should not have to go out for a trek after every meal, but learning how to dose for it and when to reduce the dose to account for intended exercise (many people here cut their calculated bolus by 50% before exercise, as oppose to doing compulsory exercise each time you eat to bring levels down.
I follow a low carb way of eating but I just jab more insulin after my meal to deal with any protein release which usually starts to happen about 2 hours after a meal. It means more injections but I actually find it easier to manage rather than harder as most people suggest, particularly now we have CGM like Libre, because I just keep an eye on my levels after a meal and if they start to drift upwards I inject a bit more insulin. Generally, I inject some before the meal for the few carbs I eat and then some 2-3 hours later when the protein starts to take effect. I don't weight or calculate carbs or protein, I just guestimate what I will need and being low carb, I can't be more than half a unit out.

Question.... Do you have a half unit pen for your NovoRapid? And a half unit pen for your Lantus for that matter? With small doses, having the ability to fine tune is really important.

I too wonder if your Lantus may be covering some of your protein release. Equally, you may just be walking the protein release off or a combination of both.

The key with being an insulin dependent diabatic is to learn to make your insulin work for you and not be frightened of it. You have to factor in a lot of things as there are something like 42 factors which impact your insulin needs and whilst food and exercise and medication are the 3 big hitters, there are lots of other factors like hormones and ambient temperature and illness and stress and sleep etc. which play a part, sometimes quite significantly.... hormones particularly can make things challenging.

Something else to consider is the insulin that you are using. Different insulins have different profiles and so one particular insulin might suit you better than another or even taking it at a different time can make a difference.
For instance, your Lantus..... When do you take it? Lantus generally lasts just under 24 hours and has a peak of activity about 5 hours after injecting. It can be injected as a single dose or split into 2 doses to achieve the best coverage for an individual and the time you take those doses can be relevant and the doses don't have to be an even split. I take Levemir which is similar but specifically designed to be split into two doses and is generally considered to be the most flexible basal. I can change my doses on a day by day basis to help manage the days when I do more or less exercise or more specifically the nights after I do more exercise as that is when I have problems with hypos. I need a lot of Levemir in the morning at 18-24 units but just a small amount in the evening of up to 5 units but often none at all. Being able to adjust my basal according to what experience tells me I need is extremely important for me and I abolutely love Levemir for this. Other basal insulins like Tresiba are very, very long acting (about 36 hours) and give a very flat profile with each dose every day topping up the previous dose. This works well for people who have a more uniform basal insulin requirement (ie about the same day and night) and not much variability. If you are female, then Tresiba may make things more challenging at different times of the month too as it needs about 3 days for any changes to become effective.

Bolus insulins also have different profiles although a little less variation. I started on NovoRapid, but changed to Fiasp which has a faster action but shorter duration. The changeover wasn't easy and it took e 2 x 3 month trials to learn how to make it work for me but it was worth the change. Another member recently changed to Lyumjev (another faster acting insulin) after many many years of using Humalog. The change was forced because she could not obtain Humalog and she was really unhappy and worried about changing, but she finds the Lyumjev absolutely wonderful and her diabetes management has improved enormously just from that one change and she has many many years of experience. So these things can all make a significant difference.

I learned about all this stuff here on the forum, so I am pleased that you have come here as I am confident that you can pick up some really useful info too, but diabetes is very individual and carefully experimenting on yourself is the key to good diabetes management and learning how to use your insulin or try new insulins to suit your lifestyle and tastes and routine. It takes time and trial and in some cases error, but worth it when things start to become more manageable.

You mention that you take a long time to recover from hypos when you have them. Are you relying on a CGM like Libre or are you finger pricking to check your recovery? Libre will typically take much longer to show your levels coming back up after a hypo which is why we are advised to finger prick 15 mins after taking a hypo treatment to check recovery. Also, what are you using to treat hypos? Hopefully fast acting carbs, but are you aware that solid hypo treatments like jelly babies or glucose tabs are best chewed really well as the glucose absorbs quicker through the cells inside your mouth than in your stomach, plus your mouth is closer to your brain, and if you are taking hypo treatments after a meal, if you swallow it quickly, it can sit on top of the food that is digesting and delay it further, so chewing really well and giving it the chance to absorb through your mouth is a better option, but don't rely on a sensor to assess recovery and don't rely on how you feel to assess recovery. I find that hypos themselves are not difficult to deal with but the adrenaline release if I go too low, gives me horrid shakes and sweating and heart pounding even when my BG has come back up, so if went by my CGM or the way I felt I would almost certainly overtreat hypos every time, whereas doing a finger prick test will help you to manage it much better.

Also, what do you have your low alarm set at? Most of us have it set above 4 to give us the opportunity to prevent hypos. Mine is 4.5, but there are many people here who set it higher at 5 or even 5.6. Again it is important to find what works for you as an individual. I tried higher but had more hypos because I ignored it and it didn't go off again once I was below that level. On a low carb diet using Fiasp, my high alarm is set at 9.2 and that generally gives me time to prevent going above 10. This level would likely not work for anyone on a normal diet, where they might be tempted to inject more insulin when the alarm went off, but for me, it usually tells me that the protein is releasing and I need to hit it with some more Fiasp.

The key thing with diabetes is to only change one thing at once and leave it for a few days to see how that change works out. If it is better, then adopt it, if worse, go back to the drawing board and try something else and make small changes and look for trends in the direction you want to go.

Also wanted to mention that timing of bolus insulin is as important as the dose. If you are using insulin and then significantly spiking after meals, the chances are that you didn't take your insulin far enough ahead of the meal. Slowly increasing the prebolus timing by a few minutes each day will help the spike to come down and you need to find the timing that works well for you, for that time of day and in some cases that meal. I needed as much as 75 mins before eating breakfast with Novo(not so)Rapid to prevent me spiking up to 15mmols every morning even on a low carb diet, but only 20-30 mins at other times of the day. I should say that 75 mins is really extreme and most people would hypo in that time scale, but you have to slowly and carefully experiment to find the timing that works for you.
Just wondering if you are seeing rises after meals and then panicking and heading out for a walk to bring them back down and then of course hypoing because you didn't factor in the exercise, when just adjusting when you inject the insulin would sort the problem, with no need for the walk, but if you wanted to walk then you would also need to reduce the bolus.

This may all seem incredibly complicated especially when you are newly diagnosed, but slowly you can learn these different tricks and techniques to enable you to use your insulin to mostly balance things. We all get it wrong from time to time though so hypos still happen occasionally and sometimes we get a whopper of a spike, but you learn to accept that is part of the challenge.
I remember the time I went to the cinema after a meal with my friend a few years ago. I ate low carb and bolussed accordingly, but sitting in the cinema afterwards and watching a very intense movie which caused me to be very anxious resulted in my levels shooting up to 17mmols.and needing masses of insulin corrections to bring it down. (Combination of not bolussing far enough in advance for the meal, sitting very still afterwards and the stress caused by the film being very tense)

AS regards your diagnosis, I think it is most likely Type 1 rather than Type 3 because your antibody tests were positive and you have other autoimmune conditions and perhaps triggered by the trauma of the surgery or perhaps the steroids put your beta cells under pressure and that triggered your immune system to attack them. Knowing which antibody tests were done may help resolve it in your own mind, but either way, the important thing is to learn how to make your insulin work for you rather than adapting your lifestyle to reduce your need for it. You may not always be in a position to walk afterwards, so you really need to find strategies with your insulin which manage it, just like your pancreas did before it lost that ability.
You are such a mine of information and I'm sure that people can relate to your experience. You should write a book./
 
Hi and welcome from me too.

If you followed a low carb way of eating before diagnosis and you are comfortable continuing with that and it works for you in other ways, then it is just a question of learning how to use your insulin to make it work for you again and no, you should not have to go out for a trek after every meal, but learning how to dose for it and when to reduce the dose to account for intended exercise (many people here cut their calculated bolus by 50% before exercise, as oppose to doing compulsory exercise each time you eat to bring levels down.
I follow a low carb way of eating but I just jab more insulin after my meal to deal with any protein release which usually starts to happen about 2 hours after a meal. It means more injections but I actually find it easier to manage rather than harder as most people suggest, particularly now we have CGM like Libre, because I just keep an eye on my levels after a meal and if they start to drift upwards I inject a bit more insulin. Generally, I inject some before the meal for the few carbs I eat and then some 2-3 hours later when the protein starts to take effect. I don't weight or calculate carbs or protein, I just guestimate what I will need and being low carb, I can't be more than half a unit out.

Question.... Do you have a half unit pen for your NovoRapid? And a half unit pen for your Lantus for that matter? With small doses, having the ability to fine tune is really important.

I too wonder if your Lantus may be covering some of your protein release. Equally, you may just be walking the protein release off or a combination of both.

The key with being an insulin dependent diabatic is to learn to make your insulin work for you and not be frightened of it. You have to factor in a lot of things as there are something like 42 factors which impact your insulin needs and whilst food and exercise and medication are the 3 big hitters, there are lots of other factors like hormones and ambient temperature and illness and stress and sleep etc. which play a part, sometimes quite significantly.... hormones particularly can make things challenging.

Something else to consider is the insulin that you are using. Different insulins have different profiles and so one particular insulin might suit you better than another or even taking it at a different time can make a difference.
For instance, your Lantus..... When do you take it? Lantus generally lasts just under 24 hours and has a peak of activity about 5 hours after injecting. It can be injected as a single dose or split into 2 doses to achieve the best coverage for an individual and the time you take those doses can be relevant and the doses don't have to be an even split. I take Levemir which is similar but specifically designed to be split into two doses and is generally considered to be the most flexible basal. I can change my doses on a day by day basis to help manage the days when I do more or less exercise or more specifically the nights after I do more exercise as that is when I have problems with hypos. I need a lot of Levemir in the morning at 18-24 units but just a small amount in the evening of up to 5 units but often none at all. Being able to adjust my basal according to what experience tells me I need is extremely important for me and I abolutely love Levemir for this. Other basal insulins like Tresiba are very, very long acting (about 36 hours) and give a very flat profile with each dose every day topping up the previous dose. This works well for people who have a more uniform basal insulin requirement (ie about the same day and night) and not much variability. If you are female, then Tresiba may make things more challenging at different times of the month too as it needs about 3 days for any changes to become effective.

Bolus insulins also have different profiles although a little less variation. I started on NovoRapid, but changed to Fiasp which has a faster action but shorter duration. The changeover wasn't easy and it took e 2 x 3 month trials to learn how to make it work for me but it was worth the change. Another member recently changed to Lyumjev (another faster acting insulin) after many many years of using Humalog. The change was forced because she could not obtain Humalog and she was really unhappy and worried about changing, but she finds the Lyumjev absolutely wonderful and her diabetes management has improved enormously just from that one change and she has many many years of experience. So these things can all make a significant difference.

I learned about all this stuff here on the forum, so I am pleased that you have come here as I am confident that you can pick up some really useful info too, but diabetes is very individual and carefully experimenting on yourself is the key to good diabetes management and learning how to use your insulin or try new insulins to suit your lifestyle and tastes and routine. It takes time and trial and in some cases error, but worth it when things start to become more manageable.

You mention that you take a long time to recover from hypos when you have them. Are you relying on a CGM like Libre or are you finger pricking to check your recovery? Libre will typically take much longer to show your levels coming back up after a hypo which is why we are advised to finger prick 15 mins after taking a hypo treatment to check recovery. Also, what are you using to treat hypos? Hopefully fast acting carbs, but are you aware that solid hypo treatments like jelly babies or glucose tabs are best chewed really well as the glucose absorbs quicker through the cells inside your mouth than in your stomach, plus your mouth is closer to your brain, and if you are taking hypo treatments after a meal, if you swallow it quickly, it can sit on top of the food that is digesting and delay it further, so chewing really well and giving it the chance to absorb through your mouth is a better option, but don't rely on a sensor to assess recovery and don't rely on how you feel to assess recovery. I find that hypos themselves are not difficult to deal with but the adrenaline release if I go too low, gives me horrid shakes and sweating and heart pounding even when my BG has come back up, so if went by my CGM or the way I felt I would almost certainly overtreat hypos every time, whereas doing a finger prick test will help you to manage it much better.

Also, what do you have your low alarm set at? Most of us have it set above 4 to give us the opportunity to prevent hypos. Mine is 4.5, but there are many people here who set it higher at 5 or even 5.6. Again it is important to find what works for you as an individual. I tried higher but had more hypos because I ignored it and it didn't go off again once I was below that level. On a low carb diet using Fiasp, my high alarm is set at 9.2 and that generally gives me time to prevent going above 10. This level would likely not work for anyone on a normal diet, where they might be tempted to inject more insulin when the alarm went off, but for me, it usually tells me that the protein is releasing and I need to hit it with some more Fiasp.

The key thing with diabetes is to only change one thing at once and leave it for a few days to see how that change works out. If it is better, then adopt it, if worse, go back to the drawing board and try something else and make small changes and look for trends in the direction you want to go.

Also wanted to mention that timing of bolus insulin is as important as the dose. If you are using insulin and then significantly spiking after meals, the chances are that you didn't take your insulin far enough ahead of the meal. Slowly increasing the prebolus timing by a few minutes each day will help the spike to come down and you need to find the timing that works well for you, for that time of day and in some cases that meal. I needed as much as 75 mins before eating breakfast with Novo(not so)Rapid to prevent me spiking up to 15mmols every morning even on a low carb diet, but only 20-30 mins at other times of the day. I should say that 75 mins is really extreme and most people would hypo in that time scale, but you have to slowly and carefully experiment to find the timing that works for you.
Just wondering if you are seeing rises after meals and then panicking and heading out for a walk to bring them back down and then of course hypoing because you didn't factor in the exercise, when just adjusting when you inject the insulin would sort the problem, with no need for the walk, but if you wanted to walk then you would also need to reduce the bolus.

This may all seem incredibly complicated especially when you are newly diagnosed, but slowly you can learn these different tricks and techniques to enable you to use your insulin to mostly balance things. We all get it wrong from time to time though so hypos still happen occasionally and sometimes we get a whopper of a spike, but you learn to accept that is part of the challenge.
I remember the time I went to the cinema after a meal with my friend a few years ago. I ate low carb and bolussed accordingly, but sitting in the cinema afterwards and watching a very intense movie which caused me to be very anxious resulted in my levels shooting up to 17mmols.and needing masses of insulin corrections to bring it down. (Combination of not bolussing far enough in advance for the meal, sitting very still afterwards and the stress caused by the film being very tense)

AS regards your diagnosis, I think it is most likely Type 1 rather than Type 3 because your antibody tests were positive and you have other autoimmune conditions and perhaps triggered by the trauma of the surgery or perhaps the steroids put your beta cells under pressure and that triggered your immune system to attack them. Knowing which antibody tests were done may help resolve it in your own mind, but either way, the important thing is to learn how to make your insulin work for you rather than adapting your lifestyle to reduce your need for it. You may not always be in a position to walk afterwards, so you really need to find strategies with your insulin which manage it, just like your pancreas did before it lost that ability.
 
Thank you for that. That is incredible all the info that is in there. I have not heard of most of this, as I was kind of patted on the head and sent away armed with flexpens. Thank you for taking the time to write it.
 
Thank you for that. That is incredible all the info that is in there. I have not heard of most of this, as I was kind of patted on the head and sent away armed with flexpens. Thank you for taking the time to write it.
My whole family ate low carb, as many of them must have been diabetic but were never spotted. The one who was had the very devil of a time, as the people treating her - just like you - did not understand that her natural diet was low carb, and I had a similar experience telling GPs dieticians and nurses that their healthy diet advice was responsible for my weight gain, and blaming me for it was never going to help.
Even when diagnosed with type 2 I got no advice on diet, except healthy balanced nonsense after I'd already got back into normal numbers eating what I was told to cut down on.
 
Yes I have to admit sometimes that I feel overwhelmed with you must eat potatoes and more carbs than I do at the moment. Something I've never done unless I had a matinee show as well as an evening performance. I don't do either at the mo until after next year op, bit it will get there, I just thought it would be a good idea to rack the brains of those that live with it. Thank you. (A camper van sounds brill, and well done on your positive journey. )
 
Thank you for that. That is incredible all the info that is in there. I have not heard of most of this, as I was kind of patted on the head and sent away armed with flexpens. Thank you for taking the time to write it.
As I said, most of what I know and have written about above, I learned from the lovely people here on this forum and experimenting on myself. I am not saying that what works for me, will work for you, but just suggesting things you could try. Medical people know the theory, but few really understand how it works in practice unless they are diabetic themselves and they don't have time to explain all the nuance even if they did understand. My consultant was absolutely horrified when I told him that I needed to prebolus 75 mins before breakfast with NR but he could not argue with my graphs or results. Their advice is to inject 10-20 mins before eating and most people never challenge that advice and it fits some people very well, but good diabetes management is about taking that advice and then adjusting it to what works for you. Waiting an hour and a quarter most mornings before I could eat breakfast was a pain in the backside and sometimes I left the house to do something and then got distracted and forgot that I hadn't had breakfast and then an hour and a half later I would suddenly have a really bad hypo, usually at an inconvenient time and place. I was told never to stack insulin, but I regularly have to stack corrections with Fiasp with my low carb way of eating and this works more effectively and more safely than injecting one big correction. Unfortunately these "rules" often hinder people from making progress with their diabetes management, because their nurse or doctor "told them" to do "this" or not to do "that" and they took it as gospel or never thought to query it.

You would definitely benefit from half unit pens if you are currently on Flexpens. The half unit pen for NovoRapid is the NovoPen Echo. It is probably the best reusable insulin pen on the market. It is environmentally more friendly than the disposable pens and it also has a last dose reminder feature which I seem to need rather too often for those "did I" or "didn't I" moments because injecting has become so automatic, I just can recall if and how much I decided to inject even just 10 mins later. The new Novopen Echo Plus also scans the dose into your Librelink app. They pens are really lovely quality and you just fit a cartridge into them and of course your spare cartridges take up much less space in the fridge. Unfortunately the Lantus cartridges don't fit into them as they are only made for NovoNordisk insulins, so you would need a different reusable pen for the Lantus unless you asked to change to Levemir which is also a Novo insulin.
I think the half unit Lantus pen is the Junior SoloStar but hopefully someone will correct me if I am wrong. Your doctor or nurse can prescribe these pens and you need a spare in the rare event of a breakage and change your insulin prescription to cartridges instead of disposable pens. There is currently a problem with shortages in some of the disposable pens because of the massive increase in demand for the injectable diabetes and weight loss drug, Ozempic.

Anyway, just thought I would advise you of what you need to ask for as regards a half unit pen. It really makes all the difference in the world when you use small doses to have that half unit option.
 
Thank you so much. I hope that my wisdom grows to as much as you and everyone else on here, so one day I am able to help others on their (slightly daunting sometimes) journey.
 
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