Feeling sorry for myself :(

mandedog

Active Member
Messages
27
Type of diabetes
Type 1
Treatment type
Insulin
I joined this forum at the beginning of September when I was first diagnosed with diabetes. I am a 60 year old woman, good health and weight plus regular exercise with no history of diabetes or prediabetes. I ended up in hospital with a DKA (HbA1C -128)- a real shock to me and my family. Since then my life has changed dramatically. I still do not have a firm diagnosis. Initially I was thought to be type 2 - I'm not sure why because from subsequent reading the signs seem to point to type 1. So in hospital I was started on Lantus basal insulin plus Metformin. The Lantus was gradually decreased and the Metformin was increased over the first few weeks. Then Gluconorm was introduced. My blood sugars continue to be all over the place - they can range in a day from 45- 260 ( I live in Canada so here that is around 2.5- 14.0 ). I have always eaten low carb and used the glycemic index so my diet is not a problem although I have had to cut my fruit intake and mainly eat berries now. My blood sugars always seem to going up or down dramatically, and I cannot keep in range. Last week I was told by my Endo. that it looks like my pancreas has recovered as much as it is going to for the moment. He decided to stop the Metformin and Gluconorm and start me on a fast acting insulin called Fiasp. So I have been using that for the last week and gradually been increasing the dose. I still seem to have high readings and it doesn't go down at night. Today I was told to keep increasing the dose until I can keep in range at least some of the time and not go to bed with high blood sugar. I am told that I am still on quite low doses of basal and fast acting insulin but I have nothing with which to compare. I think that now my health team are leaning more towards type 1 or possibly 1.5.
My whole life seems to be taken up with this- it is all anyone talks to me about and while I appreciate their love and concern, I am so much more than diabetes. I am a wife, a mother and new grandma. I am a teacher and a musician. I love to snowshoe and walk my dog. My husband has just retired and we had trips booked that have had to be canceled. I know that I am fortunate in many ways. I live close to a major teaching hospital with an amazing diabetic clinic who I know are doing their best for me- they can see my frustration.
Thank you for reading this and letting me vent. I know I have to be patient but it is hard.
 

Resurgam

Expert
Messages
9,849
Type of diabetes
Type 2 (in remission!)
Treatment type
Diet only
The problem might be believing the glycaemic index - having done a few tests I found that there is no benefit at all in low GI foods, so they are best avoided. They certainly do not help control blood glucose in any way. That might be the reason for erratic results.
Your signature shows you as a type two - it might be a good idea to alter that, as you'd be offered different advice if you were.
 

Marie 2

Well-Known Member
Messages
2,394
Type of diabetes
LADA
Treatment type
Pump
Ask for an antibody test and a C-peptide test. You say the doctors are doing good by you, but they aren't if they don't run the tests.
That will let everyone know what type of diabetes you have and put you on an appropriate path of treatment.

As a type 1 carbs don't matter, dosing matters for the carbs.
 

mandedog

Active Member
Messages
27
Type of diabetes
Type 1
Treatment type
Insulin
Ask for an antibody test and a C-peptide test. You say the doctors are doing good by you, but they aren't if they don't run the tests.
That will let everyone know what type of diabetes you have and put you on an appropriate path of treatment.

As a type 1 carbs don't matter, dosing matters for the carbs.
They want to wait a few more weeks for things to settle before doing these tests but they are on the cards. That quote is more or less what they told me today so it sounds like they don't want to confirm before the tests but seems to be heading that way.
 

mandedog

Active Member
Messages
27
Type of diabetes
Type 1
Treatment type
Insulin
The problem might be believing the glycaemic index - having done a few tests I found that there is no benefit at all in low GI foods, so they are best avoided. They certainly do not help control blood glucose in any way. That might be the reason for erratic results.
Your signature shows you as a type two - it might be a good idea to alter that, as you'd be offered different advice if you were.
I guess I have not wanted to think that I might be type 1 until I am really sure. I have been holding out hope that I might be able to reverse with diet and exercise although I cannot see how I can do much different. I think you make a good point about low GI as that has been my experience recently and I have cut most of them out. The problem is that I cannot afford to lose any more weight so I have to find some alternatives which the dietician is helping me with.
 

Marie 2

Well-Known Member
Messages
2,394
Type of diabetes
LADA
Treatment type
Pump
The antibody tells if you have the antibodies most type 1's have that attacks your beta cells. If you test positive on this test you are a definite type 1. Eventually over years the anti bodies start to drop as all your beta cells are killed or almost all killed. There are a few rare type 1's that don't have the antibodies but don't make insulin.

The C-peptide tells how much insulin you are making. As a type 2 this number will be on the high side as a type 2's problem is not in the ability to make insulin as they can't use the insulin properly. So they usually are making the higher end of normal or more than normal. For a type 1 this number is on the lower side and as type 1 progresses, that number will get lower as your body destroys your beta cells and you can't make insulin.

I've never heard of waiting to settle down before but at least they are lined up for you. 40% of us type 1's are misdiagnosed as type 2's at first. One of the signs they say to watch for is needing insulin within 3 years of diagnosis. And DKA is almost always a symptom of type 1 versus type 2. Rarely happens to a type 2.
And being skinny and losing too much weight is also more a type 1 condition than a type 2.

PS Now that you are on insulin, always carry hypo treatments with you.
 
Last edited:

mandedog

Active Member
Messages
27
Type of diabetes
Type 1
Treatment type
Insulin
The antibody tells if you have the antibodies most type 1's have that attacks your beta cells. If you test positive on this test you are a definite type 1. Eventually over years the anti bodies start to drop as all your beta cells are killed or almost all killed. There are a few rare type 1's that don't have the antibodies but don't make insulin.

The C-peptide tells how much insulin you are making. As a type 2 this number will be on the high side as a type 2's problem is not in the ability to make insulin as they can't use the insulin properly. So they usually are making the higher end of normal or more than normal. For a type 1 this number is on the lower side and as type 1 progresses, that number will get lower as your body destroys your beta cells and you can't make insulin.

I've never heard of waiting to settle down before but at least they are lined up for you. 40% of us type 1's are misdiagnosed as type 2's at first. One of the signs they say to watch for is needing insulin within 3 years of diagnosis. And DKA is almost always a symptom of type 1 versus type 2. Rarely happens to a type 2.
And being skinny and losing too much weight is also more a type 1 condition than a type 2.

PS Now that you are on insulin, always carry hypo treatments with you.
Thank you for this response. You have made things clearer for me with regard to the tests and signs of type 1 versus type 2. Really helpful.
 
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Japes

Well-Known Member
Messages
1,633
Type of diabetes
LADA
Treatment type
Insulin
My diagnosis path was obscured by the assumption I was T2 because of weight and age - once I had halved my body weight without trying, just over two years in, my GP and I both suspected I was, in fact, NOT T2 as I was doing all the right things with diet, exercise and ever-increasing medication, and so when I was referred to the clinic the GAD and C-peptide tests were done straight away.
 
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NicoleC1971

BANNED
Messages
3,451
Type of diabetes
Type 1
Treatment type
Pump
Sent you a hug because this sounds like the worst luck. It sounds as if you have a great life with lots of purpose, love and support but as you say nobody gets it other than us lot with diabetes!
Hope you will get the test results done but I guess for now you are on insulin and will be acting as if you are type 1/1.5!

I would echo the points about GI foods; contrary to what we are often told re 'healthy wholegrains'! The only way is to test 2-3 hours after a meal and see what spikes you but it most likely will be bred, pasta, rice, potatoes whether white or wholegrain variety. All the carbs eventually turns into glucose in your blood and the larger the meal time quantities then the bigger the potential error when calculating an insulin dose.
Personally I try to avoid eating any more than 30g carbs and often much less because I find once I have spiked my sugar it is hard to correct although a walk in the snow would be a great way to do this!
I hope you have plenty of strips to test or even a continuous monitoring device at least for this period of steep learning.
You have no more weight to lose so you will need to ensure you eat plenty of fat and protein
Good luck with this time of adjusting and keep looking out for the bright spots!
 
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KK123

Well-Known Member
Messages
3,967
Type of diabetes
Type 1
Treatment type
Insulin
I joined this forum at the beginning of September when I was first diagnosed with diabetes. I am a 60 year old woman, good health and weight plus regular exercise with no history of diabetes or prediabetes. I ended up in hospital with a DKA (HbA1C -128)- a real shock to me and my family. Since then my life has changed dramatically. I still do not have a firm diagnosis. Initially I was thought to be type 2 - I'm not sure why because from subsequent reading the signs seem to point to type 1. So in hospital I was started on Lantus basal insulin plus Metformin. The Lantus was gradually decreased and the Metformin was increased over the first few weeks. Then Gluconorm was introduced. My blood sugars continue to be all over the place - they can range in a day from 45- 260 ( I live in Canada so here that is around 2.5- 14.0 ). I have always eaten low carb and used the glycemic index so my diet is not a problem although I have had to cut my fruit intake and mainly eat berries now. My blood sugars always seem to going up or down dramatically, and I cannot keep in range. Last week I was told by my Endo. that it looks like my pancreas has recovered as much as it is going to for the moment. He decided to stop the Metformin and Gluconorm and start me on a fast acting insulin called Fiasp. So I have been using that for the last week and gradually been increasing the dose. I still seem to have high readings and it doesn't go down at night. Today I was told to keep increasing the dose until I can keep in range at least some of the time and not go to bed with high blood sugar. I am told that I am still on quite low doses of basal and fast acting insulin but I have nothing with which to compare. I think that now my health team are leaning more towards type 1 or possibly 1.5.
My whole life seems to be taken up with this- it is all anyone talks to me about and while I appreciate their love and concern, I am so much more than diabetes. I am a wife, a mother and new grandma. I am a teacher and a musician. I love to snowshoe and walk my dog. My husband has just retired and we had trips booked that have had to be canceled. I know that I am fortunate in many ways. I live close to a major teaching hospital with an amazing diabetic clinic who I know are doing their best for me- they can see my frustration.
Thank you for reading this and letting me vent. I know I have to be patient but it is hard.


Hi there Mandedog, it is hard to begin with because you are trying to find a balance between food/insulin and everything else. I just wanted to add that in a few months you will most definitely be able to go on your holidays and live what sounds like a wonderful life! In the first few months I found it chaotic, seemingly endless conversations with Doctors & Consultants, differing advice and opinions and on and on. Would you mind telling us a typical days food (I know you are low carb) and because you mentioned it, your doses? Obviously we are ALL very different and it is not so much the amount of the dose that's important but whether it is the right dose to keep your numbers in range. I decided (after I had become more confident and knowledgeable) to start with lower carb meals and tested before and after over many weeks to give me an idea of how different foods affected me. Once I had an idea, I upped the carbs to include other food that I wanted to eat (no obvious 'rubbish') but extra veg including///gulp///horror....root veg). I found my balance if you like and sometimes I will have a meal out that may be more carbs than I usually eat but I know roughly how to dose for it. My take is that FOOD is the other half of the medicine if you like, the medics go on and on about insulin as that is keeping us alive but the food we eat is crucial too. Once you get your levels within range you will feel much better. x
 

mandedog

Active Member
Messages
27
Type of diabetes
Type 1
Treatment type
Insulin
Hi there Mandedog, it is hard to begin with because you are trying to find a balance between food/insulin and everything else. I just wanted to add that in a few months you will most definitely be able to go on your holidays and live what sounds like a wonderful life! In the first few months I found it chaotic, seemingly endless conversations with Doctors & Consultants, differing advice and opinions and on and on. Would you mind telling us a typical days food (I know you are low carb) and because you mentioned it, your doses? Obviously we are ALL very different and it is not so much the amount of the dose that's important but whether it is the right dose to keep your numbers in range. I decided (after I had become more confident and knowledgeable) to start with lower carb meals and tested before and after over many weeks to give me an idea of how different foods affected me. Once I had an idea, I upped the carbs to include other food that I wanted to eat (no obvious 'rubbish') but extra veg including///gulp///horror....root veg). I found my balance if you like and sometimes I will have a meal out that may be more carbs than I usually eat but I know roughly how to dose for it. My take is that FOOD is the other half of the medicine if you like, the medics go on and on about insulin as that is keeping us alive but the food we eat is crucial too. Once you get your levels within range you will feel much better. x
I start the day with 6units of Lantus and depending on whether I am heading to the gym 2-4 units Fiasp. If I am going to the gym I tend to have porridge (made with 1/6 cup of steel cut oats), half cup of 2%Greek yogurt and half cup berries. On days I am not at the gym I have chia pudding or eggs and bacon and maybe a slice of whole grain toast (14g net carbs)Depending on whether I am walking in the afternoon I would have 3-4 units Fiasp before lunch. My usual lunch consists of eggs, cheese , or canned fish with a green salad, either a slice of whole grain bread (14g net carbs) or some crackers amounting to under 15g net carbs. Dinner- I have been taking 4 units Fiasp but probably need to increase as I always seem to be high in the evenings. Dinner is usually 3oz chicken or fish, 1/4 cup quinoa ( or 3 mini potatoes, or lentil bake) lots of mainly green leafy veg. I follow this with a cup of tea and 1 square 78% choc. Occasionally I will have a 'Source' yogurt. Interspersed during the day- depending on my blood sugar I may have a small apple or other fruit, ginger cracker (4g net carbs) or 1/2 a Glucerna bar. Obviously some days differ from this but this would be an average day. Today my blood sugars have swung from 14.1 after breakfast to 2.6 mid morning. As I have only just started the fast acting insulin it is very much trial and error on my part. Sometimes I seem to take too much which makes my blood sugar plunge and then other times obviously not enough. I am just heading to bed and my reading is 13.6. ( We had friends to dinner tonight and I made soup (17g net carbs) and had a slice of whole grain bread. My friend brought home made apple pie but I just had a plain apple and some cheese) I have a freestyle Libre so can check frequently which I am doing to try and work out what causes the spikes and dips. That is a lot of info but if you have any suggestions I am happy to hear them.
 

KK123

Well-Known Member
Messages
3,967
Type of diabetes
Type 1
Treatment type
Insulin
I start the day with 6units of Lantus and depending on whether I am heading to the gym 2-4 units Fiasp. If I am going to the gym I tend to have porridge (made with 1/6 cup of steel cut oats), half cup of 2%Greek yogurt and half cup berries. On days I am not at the gym I have chia pudding or eggs and bacon and maybe a slice of whole grain toast (14g net carbs)Depending on whether I am walking in the afternoon I would have 3-4 units Fiasp before lunch. My usual lunch consists of eggs, cheese , or canned fish with a green salad, either a slice of whole grain bread (14g net carbs) or some crackers amounting to under 15g net carbs. Dinner- I have been taking 4 units Fiasp but probably need to increase as I always seem to be high in the evenings. Dinner is usually 3oz chicken or fish, 1/4 cup quinoa ( or 3 mini potatoes, or lentil bake) lots of mainly green leafy veg. I follow this with a cup of tea and 1 square 78% choc. Occasionally I will have a 'Source' yogurt. Interspersed during the day- depending on my blood sugar I may have a small apple or other fruit, ginger cracker (4g net carbs) or 1/2 a Glucerna bar. Obviously some days differ from this but this would be an average day. Today my blood sugars have swung from 14.1 after breakfast to 2.6 mid morning. As I have only just started the fast acting insulin it is very much trial and error on my part. Sometimes I seem to take too much which makes my blood sugar plunge and then other times obviously not enough. I am just heading to bed and my reading is 13.6. ( We had friends to dinner tonight and I made soup (17g net carbs) and had a slice of whole grain bread. My friend brought home made apple pie but I just had a plain apple and some cheese) I have a freestyle Libre so can check frequently which I am doing to try and work out what causes the spikes and dips. That is a lot of info but if you have any suggestions I am happy to hear them.

It's hard isn't it when you are eating a healthy diet and you are still having the ups and downs. I found at the start that even a meal of around 30/40 carbs was hard for me to manage and hard for me to match with the insulin amounts they had put me on, even though the meal was 'healthy', I found that a snack of an apple (15 to 20 carbs) also required 1 unit of insulin, porridge was even more problematic bearing in mind I was then on a fixed dose and needed to eat to the insulin. Now I am NOT saying don't eat them because when you have more experience in dosage and can factor in things like exercise then yes you definitely can eat them. With how you describe the swings (especially following breakfast) I would have said try some very low carb options just to experiment with. Normally I would say don't forget to adjust your insulin accordingly but it looks as though you are on a fixed dose of insulin? If this is the case you MUST seek advice from your diabetes team before you make any changes because if you change your 'normal' food then the insulin must be changed also. I imagine they have started you off like this to try and monitor how you are reacting (they do that over here too) but it does make it hard to manage any swings. Don't be in a rush, speak to your team and when you are able to adjust insulin yourself you will probably find it a lot easier to manage. Once I was on a flexible regime, I did try very low carb meals which made it easier to calculate the insulin dose, then gradually I upped the carbs in some meals and tested, tested, tested so eventually after 2 years I at least had a good idea of how certain carbs affected me, I learnt also that just because a carb is deemed healthy (apple/porridge/wholemeal bread) they STILL had the exact same affect on my levels as a chocolate éclair or bag of crisps so try to think in terms of the amount of carbs rather than the food itself. This might stop the swings which seem to be showing you that you haven't been able to match the carbs you are eating with the insulin you are taking (that's simplistic because many other things come into it but those two things are the ones that are under your control). The potatoes in the evening, well potato for me sends me up like a rocket so if I have them (and I tend not to) then I need more insulin and possible a split dose (but you are not at the stage by the sounds of it to implement that which is probably why you are high in the evenings).Of course I haven't even mentioned basal!! x
 

Marie 2

Well-Known Member
Messages
2,394
Type of diabetes
LADA
Treatment type
Pump
Try to learn carb counting and adjusting dosing as soon as you can. It will allow you more freedom in what you eat. Literally staying at too high of a BG number is not enough insulin for what you ate and dropping too low is too much insulin for what you ate. Then add in exercise which is a trick to old hats even. Exercise lowers your need of insulin.

And right now if you are a type 1, you are in a honeymoon period which means you are still making some insulin until you don't. Which means your pancreas will randomly decide to produce some insulin when it decides too. That makes it harder to figure out dosing.
 

mandedog

Active Member
Messages
27
Type of diabetes
Type 1
Treatment type
Insulin
It's hard isn't it when you are eating a healthy diet and you are still having the ups and downs. I found at the start that even a meal of around 30/40 carbs was hard for me to manage and hard for me to match with the insulin amounts they had put me on, even though the meal was 'healthy', I found that a snack of an apple (15 to 20 carbs) also required 1 unit of insulin, porridge was even more problematic bearing in mind I was then on a fixed dose and needed to eat to the insulin. Now I am NOT saying don't eat them because when you have more experience in dosage and can factor in things like exercise then yes you definitely can eat them. With how you describe the swings (especially following breakfast) I would have said try some very low carb options just to experiment with. Normally I would say don't forget to adjust your insulin accordingly but it looks as though you are on a fixed dose of insulin? If this is the case you MUST seek advice from your diabetes team before you make any changes because if you change your 'normal' food then the insulin must be changed also. I imagine they have started you off like this to try and monitor how you are reacting (they do that over here too) but it does make it hard to manage any swings. Don't be in a rush, speak to your team and when you are able to adjust insulin yourself you will probably find it a lot easier to manage. Once I was on a flexible regime, I did try very low carb meals which made it easier to calculate the insulin dose, then gradually I upped the carbs in some meals and tested, tested, tested so eventually after 2 years I at least had a good idea of how certain carbs affected me, I learnt also that just because a carb is deemed healthy (apple/porridge/wholemeal bread) they STILL had the exact same affect on my levels as a chocolate éclair or bag of crisps so try to think in terms of the amount of carbs rather than the food itself. This might stop the swings which seem to be showing you that you haven't been able to match the carbs you are eating with the insulin you are taking (that's simplistic because many other things come into it but those two things are the ones that are under your control). The potatoes in the evening, well potato for me sends me up like a rocket so if I have them (and I tend not to) then I need more insulin and possible a split dose (but you are not at the stage by the sounds of it to implement that which is probably why you are high in the evenings).Of course I haven't even mentioned basal!! x
There is just so much to learn and each day I seem to mess up somehow. I REALLY appreciate all your comments, advice and encouragement; I am learning so much. I can vary the dose of Fiasp as I feel necessary but I just can't seem to get it right with what I am eating. I also wonder if the Lantus is not carrying through for 24hours if I am high in the evening and during the night. But when I added an extra unit I had 2 hypos so not sure about that. I tend to have my highest carb meal in the evening so maybe I should switch that to lunch and lower my carbs for dinner. That's the problem, there are so many different variants. Then one day you think you have cracked it and the next day the same thing doesn't work!!
 

Marie 2

Well-Known Member
Messages
2,394
Type of diabetes
LADA
Treatment type
Pump
Lantus can vary person to person on length of time it works, but it can vary day to day on the same person too, so that doesn't help. It does have a slight reputation for causing unexplained lows off and on. I used to use it and I was happy with it. Some people split dose it.

The bolus doses will be a lot harder to figure out until you get your basal dose down. Plus then there's the honeymoon period.

I did much better with a pump as my basal needs differ different times of the day as does my bolus carb ratio. In my case I have DP, dawn phenomenon and my am requirements are much higher on both. By afternoon my basal and bolus requirement drops and by night I take half the amount of insulin per carb.
 

mandedog

Active Member
Messages
27
Type of diabetes
Type 1
Treatment type
Insulin
Lantus can vary person to person on length of time it works, but it can vary day to day on the same person too, so that doesn't help. It does have a slight reputation for causing unexplained lows off and on. I used to use it and I was happy with it. Some people split dose it.

The bolus doses will be a lot harder to figure out until you get your basal dose down. Plus then there's the honeymoon period.

I did much better with a pump as my basal needs differ different times of the day as does my bolus carb ratio. In my case I have DP, dawn phenomenon and my am requirements are much higher on both. By afternoon my basal and bolus requirement drops and by night I take half the amount of insulin per carb.
Yes, I am finding that time of day plays quite a part in this. It also depends when I exercise. I had 8 hours yesterday where I stayed in the target range I have been given so that felt good! Each week when I attend the Diabetes clinic things get tweaked and I learn a bit more. This forum is great though because I can go in to the clinic with ideas that I have read here and discuss with my Dietician and Endocrinologist- and they always hear me out and are open to discussing. It helps to know options and questions to ask.
 
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