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Just been diagnosed with diabetes and so so so confused
- Thread starter Leya
- Start date
- Status
I need advice. My ketostick is showing positive but at the lowest level. Is there something I should do? I was about to eat some oatmeal but not sure if I ought to, perhaps there's something else I should eat. My face feels ridiculously hot but my blood sugar is only 9.1. The diabetes nurse is coming on Tuesday but the insulin prescription is ready to be collected at pharmacy. My skin feels incredibly itchy, hands and feet very cold.
NHS 24 said they can't send someone to administer treatment, they sent ambulance. Paramedics checked heart, BP etc and there's nothing wrong there. For now I'm drinking tons of water and nibbling on grilled chicken.
Thanks
NHS 24 said they can't send someone to administer treatment, they sent ambulance. Paramedics checked heart, BP etc and there's nothing wrong there. For now I'm drinking tons of water and nibbling on grilled chicken.
Thanks
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TheClockworkDodo
Well-Known Member
- Relationship to Diabetes
- Type 1
Looks like no-one saw this earlier, @Leya - I hope you are OK now. I wouldn't be too worried about ketones at the lowest level, especially as your blood sugar's not that high, but do keep checking the ketones and if they get any higher you might need to go to A&E or call the ambulance again and tell them you've been prescribed insulin but not yet taught how to use it, and you think you may have diabetes ketoacidosis (DKA).
But you may just be sickening for something - blood sugar tends to get higher with any kind of illness, even just a cold, and you're more likely to get ketones if you aren't very well. Most type 1s get them now and again, at a low level, so it is something to watch rather than something to panic about unless they get higher. Drinking water and eating chicken both sound like good things to do - both for illness and for helping get your blood sugar down and get rid of the ketones (oatmeal is not such a good idea).
Please let us know how you are, and I hope you are OK until the nurse comes on Tuesday, but if the ketones get any higher please don't be afraid to call an ambulance again, because DKA is very serious and needs to be treated with insulin asap.
But you may just be sickening for something - blood sugar tends to get higher with any kind of illness, even just a cold, and you're more likely to get ketones if you aren't very well. Most type 1s get them now and again, at a low level, so it is something to watch rather than something to panic about unless they get higher. Drinking water and eating chicken both sound like good things to do - both for illness and for helping get your blood sugar down and get rid of the ketones (oatmeal is not such a good idea).
Please let us know how you are, and I hope you are OK until the nurse comes on Tuesday, but if the ketones get any higher please don't be afraid to call an ambulance again, because DKA is very serious and needs to be treated with insulin asap.
I'm sorry to be a pest but I'm more confused than ever now.
Diabetes Nurse came this morning and put me on insulin dose in the morning which will cover me all day until bed time and told me to go back to eating carbs as normal (before I was diagnosed). She said the dose may need to be changed depending on how my blood glucose levels look. Now here's where I'm confused: my fasting and preprandial readings have always been fine. It's 2-3 hours after eating they are at 15-22. She said she's not interested in postprandial readings and I only need to take fasting reading and 2 preprandial readings, she's not interested in my high levels 2-3 hours after eating but I was under the impression is they are significant - they definitely feel so in terms of crappy symptoms,
Please excuse my ignorance here, but I don't see the point of taking the insulin at all since the readings she's asking for are already ok. I can see that perhaps she'd like to see them a bit lower. I just feel so darned ill if I eat any carbs. I had meusli and fresh fruit for breakfast an hour after the insulin, checked my blood sugar 2 hours after (for my own curiosity) and it was 17.4, plus I felt poorly and had to go to bed.
My readings have all been fine since Saturday with a diet of only eating chicken and drinking only water. I understand that I'm trying to apply logic to a situation I have no understanding of, but the bottom line is I just can't see myself eating carbs because I feel so absolutely dreadful.
I appreciate anything you could tell me that would help me understand what is happening.
With gratitude,
Leya
Diabetes Nurse came this morning and put me on insulin dose in the morning which will cover me all day until bed time and told me to go back to eating carbs as normal (before I was diagnosed). She said the dose may need to be changed depending on how my blood glucose levels look. Now here's where I'm confused: my fasting and preprandial readings have always been fine. It's 2-3 hours after eating they are at 15-22. She said she's not interested in postprandial readings and I only need to take fasting reading and 2 preprandial readings, she's not interested in my high levels 2-3 hours after eating but I was under the impression is they are significant - they definitely feel so in terms of crappy symptoms,
Please excuse my ignorance here, but I don't see the point of taking the insulin at all since the readings she's asking for are already ok. I can see that perhaps she'd like to see them a bit lower. I just feel so darned ill if I eat any carbs. I had meusli and fresh fruit for breakfast an hour after the insulin, checked my blood sugar 2 hours after (for my own curiosity) and it was 17.4, plus I felt poorly and had to go to bed.
My readings have all been fine since Saturday with a diet of only eating chicken and drinking only water. I understand that I'm trying to apply logic to a situation I have no understanding of, but the bottom line is I just can't see myself eating carbs because I feel so absolutely dreadful.
I appreciate anything you could tell me that would help me understand what is happening.
With gratitude,
Leya
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TheClockworkDodo
Well-Known Member
- Relationship to Diabetes
- Type 1
Um 
I think you may need @mikeyB here, because he knows about type 3c, but if I were you I'd be pretty confused too - obviously you need to know how food effects you so you know which foods you can eat, and equally obviously you don't want your blood sugar going up to 17.4
But you do want to eat some carbs now you're on insulin, because you don't want to risk your blood sugar going too low either. It may be that muesli and fresh fruit (both very high in carbs and fast-acting carbs at that) were a bit too much, and that you need to stick to slow-acting carbs and eat them with fat and/or protein so they won't spike your blood sugar so much. Could you try, for instance, some boiled potatoes with your chicken, or a piece of brown toast with some eggs, or some ryvita and cheese, and see how those effect you?
I think you may need @mikeyB here, because he knows about type 3c, but if I were you I'd be pretty confused too - obviously you need to know how food effects you so you know which foods you can eat, and equally obviously you don't want your blood sugar going up to 17.4 But you do want to eat some carbs now you're on insulin, because you don't want to risk your blood sugar going too low either. It may be that muesli and fresh fruit (both very high in carbs and fast-acting carbs at that) were a bit too much, and that you need to stick to slow-acting carbs and eat them with fat and/or protein so they won't spike your blood sugar so much. Could you try, for instance, some boiled potatoes with your chicken, or a piece of brown toast with some eggs, or some ryvita and cheese, and see how those effect you?
Cuffie81
New Member
- Relationship to Diabetes
- Type 1
Test before every main meal, before bed and first thing in morning.
Are you on insulin?
You would expect BG levels to be high after meal then should drop as the insulin peeks.
But thirsty, excess toilet etc is sign of running hyperglycemic and run the risk of ketones, ketoacidosis and damaging effects if they stay high for long periods.
Robin
Well-Known Member
- Relationship to Diabetes
- Type 1
- Pronouns
- She/Her
Why would you never test two hours after a meal, Cuffie? It was only by doing that that I learnt that I need to take my insulin much further in advance of more carby meals than I thought, to avoid a spike into the teens between meals. It helped me feel better , and reduced my overall HbA1c.
Spoke to the DSN today and it didn't go well. She insists my high postprandial BG levels are normal, "EVERYBODY's blood sugar is high 2-3 hours after eating", insists I have type 2, "I'm an expert and I've never heard of type 3c". Fasting rates of 6-6.5 mean that the dose of insulin she has me on is perfect (6 units Insulatard).
Nuff said, game over. I just feel like crying. For now I could use advice on how to have carbs in my diet safely as at 6 stone and BMI of 15, I need to gain some weight.
Thanks
xxx Leya
Nuff said, game over. I just feel like crying. For now I could use advice on how to have carbs in my diet safely as at 6 stone and BMI of 15, I need to gain some weight.
Thanks
xxx Leya
mikeyB
Well-Known Member
- Relationship to Diabetes
- Type 1
Is the diabetes nurse the specialist you were promised? She clearly knows sod all about 3c is she has never heard of it. I can’t repeat often enough, you are NOT type 2.
It doesn’t matter what the C-Peptide shows, you are not producing enough insulin, and never will. You need to be on multi dose insulin like aType 1. Nobody on the pancreatitis forum is being treated like you are. You must insist on referral to a diabetes specialist, because being treated by ignoramuses like your GP and the Diabetes Nurse, who clearly admits she knows bugger all about the pancreas, will cause you unnecessary suffering.
If your GP refuses to refer you, contact your pancreatic team and ask them to cross refer you to a specialist. That would work in Scotland, but the stupid way the NHS works in England may mean that they would have to pass the referral back to your GP to send the referral through the CCG, who equally know zip about pancreatic surgery. Make a noise, shout it from the rooftops, you need to see a specialist. As soon as possible.
It looks like you are going to have to do all the work. But think of it like this - it’s your pancreas, it’s your diabetes. Nobody else is helping you, so do it yourself. Your GP should be pleased to get your treatment out of his hands. Go on, take ownership.🙂
It doesn’t matter what the C-Peptide shows, you are not producing enough insulin, and never will. You need to be on multi dose insulin like aType 1. Nobody on the pancreatitis forum is being treated like you are. You must insist on referral to a diabetes specialist, because being treated by ignoramuses like your GP and the Diabetes Nurse, who clearly admits she knows bugger all about the pancreas, will cause you unnecessary suffering.
If your GP refuses to refer you, contact your pancreatic team and ask them to cross refer you to a specialist. That would work in Scotland, but the stupid way the NHS works in England may mean that they would have to pass the referral back to your GP to send the referral through the CCG, who equally know zip about pancreatic surgery. Make a noise, shout it from the rooftops, you need to see a specialist. As soon as possible.
It looks like you are going to have to do all the work. But think of it like this - it’s your pancreas, it’s your diabetes. Nobody else is helping you, so do it yourself. Your GP should be pleased to get your treatment out of his hands. Go on, take ownership.🙂
TheClockworkDodo
Well-Known Member
- Relationship to Diabetes
- Type 1
In the meanwhile, I'd try to keep as much as possible to low GI carbs as your body should digest them more slowly, and to mix them as much as possible with fat, protein, and veg, rather than eating carbs on their own, as that will also slow them down more.
Different foods will effect different people differently, of course, so you'll need to test to be sure as some of these will be more suitable for you than others, but low GI carbs include: porridge, new potatoes, brown rice, sweet potatoes, whole milk, yogurt, soya/linseed bread such as burgen bread, heavily seeded/mixed grain bread, chocolate, oatcakes, beans & lentils, carrots, apples, and pears. Mix them with nuts, cheese, butter, green veg, meat, and fish as much as possible. You could also try a tub of ice cream (medium GI but mostly fat rather than carbs) and see how you get on with that, and even try a small cake that's very fat-based, like a chocolate brownie (I hardly need any insulin for those - for comparison I need twice as much for flapjacks and three times as much for scones).
Avoid high GI foods like white bread, most cereals, white rice, mashed potatoes, chips, scones, and donuts, and also avoid anything likely to spike blood sugar, which includes fruit juice and fruit drinks, dried fruits, bananas, grapes, exotic fruits, jam, and honey.
Hopefully that will help for a bit to keep the balance between losing any more weight and spiking your blood sugar too much, but I think you do, as Mike says, need to be on rapid acting insulin as well as the slow acting one, so I really hope your pancreatic team will be able to help.
Different foods will effect different people differently, of course, so you'll need to test to be sure as some of these will be more suitable for you than others, but low GI carbs include: porridge, new potatoes, brown rice, sweet potatoes, whole milk, yogurt, soya/linseed bread such as burgen bread, heavily seeded/mixed grain bread, chocolate, oatcakes, beans & lentils, carrots, apples, and pears. Mix them with nuts, cheese, butter, green veg, meat, and fish as much as possible. You could also try a tub of ice cream (medium GI but mostly fat rather than carbs) and see how you get on with that, and even try a small cake that's very fat-based, like a chocolate brownie (I hardly need any insulin for those - for comparison I need twice as much for flapjacks and three times as much for scones).
Avoid high GI foods like white bread, most cereals, white rice, mashed potatoes, chips, scones, and donuts, and also avoid anything likely to spike blood sugar, which includes fruit juice and fruit drinks, dried fruits, bananas, grapes, exotic fruits, jam, and honey.
Hopefully that will help for a bit to keep the balance between losing any more weight and spiking your blood sugar too much, but I think you do, as Mike says, need to be on rapid acting insulin as well as the slow acting one, so I really hope your pancreatic team will be able to help.
Thank you so much Mike and Juliet. I can't describe how relieved I feel from having you listen to me and not talk to me like I'm a moron. The wee problem is that I don't have a pancreatic team or a consultant. The only "Mr" I ever saw who treated me reasonably arranged prescriptions for Creon, Fortisip and pain meds and educated me in terms of eating (none of which had happened at any of the 20+ hospital admissions I'd had previously. He advised me to do my best with pain and eating/weight management and only ever consider surgical intervention if it just became intolerable. That was 12 years ago and I've felt hugely lucky and grateful that I've managed without having to go to hospital again since.
I'm not entirely sure how to proceed here but right now I don't care. I'm just so bloody grateful for your replies and will prepare a shopping list and get eating those carbs.
Thanks
Leya xxx
I'm not entirely sure how to proceed here but right now I don't care. I'm just so bloody grateful for your replies and will prepare a shopping list and get eating those carbs.
Thanks
Leya xxx
TheClockworkDodo
Well-Known Member
- Relationship to Diabetes
- Type 1
Good luck, Leya - I really hope you're able to find a medical professional who will take you seriously. I thought of a couple of other things after posting earlier. One is that most people find their blood sugar rises in the morning, so if you find eating (say) porridge or burgen toast in the morning spikes you, don't rule them out altogether, just go for bacon & eggs or something else carb-free for breakfast and try the carbier things again another day but later in the day. Also avoid carby foods late at night, keep them for lunch and dinner, and if you're hungry at night eat something like yogurt or nuts.
The other thing is that you're not going to get perfect readings between 4-8 without rapid-acting insulin (even if you were on rapid-acting insulin you wouldn't get all your readings at those levels) so don't stress about readings of 10ish or even 12ish, just try to keep them out of the teens - if you find one of the things I listed consistently spikes you up to 17 then that's not suitable for you, but if it spikes you up to 12 it might be worth it in the short term just to put the weight on.
And if you are well enough to have a short walk (or something of that sort) after meals it will help to stop you spiking (I'm aware this might not be feasible for you, I'm ill with other conditions myself which make exercise difficult, but I find even a small amount makes a big difference to my blood sugar).
The other thing is that you're not going to get perfect readings between 4-8 without rapid-acting insulin (even if you were on rapid-acting insulin you wouldn't get all your readings at those levels) so don't stress about readings of 10ish or even 12ish, just try to keep them out of the teens - if you find one of the things I listed consistently spikes you up to 17 then that's not suitable for you, but if it spikes you up to 12 it might be worth it in the short term just to put the weight on.
And if you are well enough to have a short walk (or something of that sort) after meals it will help to stop you spiking (I'm aware this might not be feasible for you, I'm ill with other conditions myself which make exercise difficult, but I find even a small amount makes a big difference to my blood sugar).
Thanks Juliet. Your advice helped me prepare some yummy food which didn't make me feel ill and didn't raise my numbers high and it WASN'T CHICKEN - WooHooo 🙂 I can see it's going to take me time, trial and error to get this to work but I don't feel so alone and afraid now.
I spoke to a different GP this morning who explained that I am indeed under the care of the Specialist Diabetes Clinic of Edinburgh and the DSN who is treating me is doing so under the instruction of the clinic. I explained my concerns and she seemed understanding and sympathetic but said her hands are tied. She said all she can do is send an email outlining my concerns and hope that a Doctor at the clinic would review my case.
Is it ok for me to keep asking questions on this thread? I'm running out of injections sites since I don't have any fatty bits as such, so could use some advice about how to manage that. The cold tingling hands and feet, itchy skin and flushed face after eating is a mystery to me. DSN said it's probably a food allergy but that doesn't make sense, but again - what do I know?
Thanks Mike, it was your question that prompted me to call GP again. Now we know the answer I feel somewhat more confused than before as it sounds like the Doctor(s) at the clinic have diagnosed me as type 2 and DNS is treating me as such. I did really push with the GP that postprandial symptoms and numbers are being ignored and could I at least get official confirmation of DNS statement that they are not of any concern. As far as her never having heard of type 3, GP said the label doesn't matter.
Truly with gratitude,
Leya
I spoke to a different GP this morning who explained that I am indeed under the care of the Specialist Diabetes Clinic of Edinburgh and the DSN who is treating me is doing so under the instruction of the clinic. I explained my concerns and she seemed understanding and sympathetic but said her hands are tied. She said all she can do is send an email outlining my concerns and hope that a Doctor at the clinic would review my case.
Is it ok for me to keep asking questions on this thread? I'm running out of injections sites since I don't have any fatty bits as such, so could use some advice about how to manage that. The cold tingling hands and feet, itchy skin and flushed face after eating is a mystery to me. DSN said it's probably a food allergy but that doesn't make sense, but again - what do I know?
Thanks Mike, it was your question that prompted me to call GP again. Now we know the answer I feel somewhat more confused than before as it sounds like the Doctor(s) at the clinic have diagnosed me as type 2 and DNS is treating me as such. I did really push with the GP that postprandial symptoms and numbers are being ignored and could I at least get official confirmation of DNS statement that they are not of any concern. As far as her never having heard of type 3, GP said the label doesn't matter.
Truly with gratitude,
Leya
mikeyB
Well-Known Member
- Relationship to Diabetes
- Type 1
Then I don’t understand why they are treating you as a Type2. It’s a bit of a coincidence developing Type 2 diabetes after losing two thirds of your pancreas. Looks like they haven’t seen many post pancreatectomy patients, if any. They aren’t common. I still think you need to challenge the specialist to explain why he thinks you are T2.
TheClockworkDodo
Well-Known Member
- Relationship to Diabetes
- Type 1
Of course it's OK, but I think you'd get more answers if you start two new threads to ask about the injection sites and about the reactions you're getting after eating - people who can help will be more likely to see the questions then.
I find injecting in my buttocks easiest, but I'm in the healthy BMI range rather than the underweight range. We do have some other very slim and even underweight people on the forum though so they might have advice for you about injecting.
The cold tingling hands & feet, itchy skin, and flushed face after eating aren't diabetes symptoms, so maybe they are some sort of adverse reaction to some type of food, but not one I've come across (and I have a whole load of food intolerances!). Some adverse reactions are weird though - I get something fairly similar to what you're getting if I go anywhere near a wet primula (dry primulas are fine!!). I'd start a thread to see if anyone has any other ideas though!
Mike, I haven't had any surgery done to my pancreas. I can't think what I've said to give that impression. It's a case of chronic pancreatitis and I do remember being told that I'd become diabetic in the future as pancreatic function deteriorated. Sorry about the confusion. Does that change things?
Thanks
mikeyB
Well-Known Member
- Relationship to Diabetes
- Type 1
No, but sorry for my error. Chronic pancreatitis is indiscriminate in the tissue it damages, so although the symptoms of it relate to Alpha cell destruction, the Beta cells are collateral damage. So it’s still not Type 2, and won’t respond effectively to Type 2 treatment.
As you’ve seen on the CP site, not everyone with CP develops diabetes. It all depends on that collateral damage.
As you’ve seen on the CP site, not everyone with CP develops diabetes. It all depends on that collateral damage.
Hepato-pancreato
Well-Known Member
- Relationship to Diabetes
- Type 3c
I had chronic pancreatitis for 12 years. All that time I was not diabetic.
Then major pancreatic surgery removing the majority of my pancreas. I became diabetic. Type3c as my pancreatic team informed me. Treated the same as a Type 1 but not a Type 1. Like Type 2’s on insulin. Not a type 1 but Treated the same yet still a type 2. As Mikey says you are a type 3c 100%.
Then major pancreatic surgery removing the majority of my pancreas. I became diabetic. Type3c as my pancreatic team informed me. Treated the same as a Type 1 but not a Type 1. Like Type 2’s on insulin. Not a type 1 but Treated the same yet still a type 2. As Mikey says you are a type 3c 100%.
Drummer
Well-Known Member
- Relationship to Diabetes
- Type 2
I think some of the advice is only apt for someone who is using a fast acting insulin at meal times to work on the carbs eaten.
I have no experience with insulin, but I do have a B.Sc degree and a wickedly logical mind.
You have - from your description, been given a slow acting insulin - the type used as basal.
It is a background insulin to maintain your body .
You have no bolus insulin (used before meals) to counter the carbs from food.
My thought is that if you can eat a number of small amounts of carbs throughout the day to take full advantage of the basal insulin , either with meals or as snacks then you would get the most benefit.
Eating high carb foods a few times a day obviously is too much for your body and the single injection to cope with - hence the high readings.
I would be wary about high carb foods with a so called low GI or GL - having tested a few I got almost the same reaction from low as high - far too high, so rather than keep repeating the same thing and hoping for a different result I assigned the whole Idea of 'safe but high' carbs to the bin.
You might tell you nurse that as a type two diabetic using low carb to manage it, I had a BG level of 5.6 mmol/l after Christmas dinner and never saw a pp reading over 8mmol/l after a few months from diagnosis and reducing my insulin resistance - but of course I was checking rather than trusting to luck and the advice of my diabetes educators.
If you keep seeing high numbers and feeling unwell - I was told that I was a very bad diabetic when diagnosed with a BG level of 17.1 mmol/l - I suggest that you keep telling people and not take their assurances that it isn't even worth testing - it simply can't be right.
I have no experience with insulin, but I do have a B.Sc degree and a wickedly logical mind.
You have - from your description, been given a slow acting insulin - the type used as basal.
It is a background insulin to maintain your body .
You have no bolus insulin (used before meals) to counter the carbs from food.
My thought is that if you can eat a number of small amounts of carbs throughout the day to take full advantage of the basal insulin , either with meals or as snacks then you would get the most benefit.
Eating high carb foods a few times a day obviously is too much for your body and the single injection to cope with - hence the high readings.
I would be wary about high carb foods with a so called low GI or GL - having tested a few I got almost the same reaction from low as high - far too high, so rather than keep repeating the same thing and hoping for a different result I assigned the whole Idea of 'safe but high' carbs to the bin.
You might tell you nurse that as a type two diabetic using low carb to manage it, I had a BG level of 5.6 mmol/l after Christmas dinner and never saw a pp reading over 8mmol/l after a few months from diagnosis and reducing my insulin resistance - but of course I was checking rather than trusting to luck and the advice of my diabetes educators.
If you keep seeing high numbers and feeling unwell - I was told that I was a very bad diabetic when diagnosed with a BG level of 17.1 mmol/l - I suggest that you keep telling people and not take their assurances that it isn't even worth testing - it simply can't be right.
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