Support needed

[s.sollis]

Hi I was diagnosed with type 2 in May 2008. I started metformin and cliglazide in 2010. I've never had any real control over my blood sugars and as a result my hbc1a was 104. I started on humalin I in August last year. I was then also put on humalog at mealtimes. I was taken off the tablets as I took an overdose of metformin and ended up in intensive care. I feel like I was just given the insulin and just left to get on with it. Then at New year I ended up in hospital with DKA. The consultant there changed me on to lantas once a day and said I was type 1. Since then I see a DSN but at a different hospital and she is not convinced that I am type 1. I'm really struggling and feel confused about what I should be eating, but more so with my insulin. At meal times I just guess how much I should take, my control is still poor but has come down from HI/ 30s to between 7 and 23. I up my insulin a little at a time, but then my nurse puts it down again. I've brought the carbs and cals book and that has been very helpful but I'm still unsure how much insulin I should be taking. Any advice would gratefully be received.

 

[noblehead]

Sorry to hear about all your troubles @s.sollis

Register with the following, its a carb counting course which should help somewhat:

http://www.bdec-e-learning.com/

 

[s.sollis]

Sorry to hear about all your troubles @s.sollis

Register with the following, its a carb counting course which should help somewhat:

http://www.bdec-e-learning.com/

Thank you

 

[noblehead]

No problem.

You should also make sure your basal dose is sufficient to meet your body's needs, have a look at the following, it's for pump users but the advice on basal testing is the same for those on MDI:

http://www.salforddiabetescare.co.uk/index2.php?nav_id=1007

 

[Daibell]

HI. Anyone going into DKA is probably T1. Can I ask what your BMI is? if you are not overweight that is another T1 indicator. Yes do find out more about carb-counting. We all have to guess at times, but I'm fairly good now at getting near the right carb level. It's not for me to over-ride your DN, but I think many of us do adjust our insulin ourselves once we get the hang of it but as always watch out for hypos and test a lot. I've had to gradually increase my basal over the last two years but do it one shot a at time and then leave it at that for a few days. I adjust my Bolus ratio based on experience. How can the DN justify telling you to reduce your insulin back down when your blood sugar is too high; I think you need to challenge her to give you a solution for your high blood sugar. If you don't get anywhere ask to be referred to someone else.

 

[Chook]

Well done for asking for support; I know it's not an easy thing to do. Has your DSN said why she thinks you're type one?

 

[mo53]

Hello again @s.sollis I am so glad you have started this thread. Already you have two excellent suggestions from @noblehead . With you using insulin it is much better that you have contact with others the same. Brilliant! Well done my low carb friend.

 

[s.sollis]

HI. Anyone going into DKA is probably T1. Can I ask what your BMI is? if you are not overweight that is another T1 indicator. Yes do find out more about carb-counting. We all have to guess at times, but I'm fairly good now at getting near the right carb level. It's not for me to over-ride your DN, but I think many of us do adjust our insulin ourselves once we get the hang of it but as always watch out for hypos and test a lot. I've had to gradually increase my basal over the last two years but do it one shot a at time and then leave it at that for a few days. I adjust my Bolus ratio based on experience. How can the DN justify telling you to reduce your insulin back down when your blood sugar is too high; I think you need to challenge her to give you a solution for your high blood sugar. If you don't get anywhere ask to be referred to someone else.

Hi, my bmi is 29 so I'm over weight, but I've lost 4 and half stone since 2014 without trying. I have been increasing my insulin on my own as I was getting some ok results before she lowered my insulin. I think I just need to keep doing this and prove to her I'm right when I get better/lower blood sugars. I'm going to speak to my gp as well as I'm in constant pain,and at night I hardly sleep because of pain/ restless legs and my mind worrying about things like this. I'm on strong sedation but I'm lucky if I get 2hours a night.

 

[s.sollis]

Well done for asking for support; I know it's not an easy thing to do. Has your DSN said why she thinks you're type one?

No she thinks I'm not, but she wanted to talk to the hospital I went to when I was DKA. She doesn't think I was. Trust me they said to my husband it was a good job he phoned the ambulance when he did as I was really poorly.

 

[s.sollis]

Hello again @s.sollis I am so glad you have started this thread. Already you have two excellent suggestions from @noblehead . With you using insulin it is much better that you have contact with others the same. Brilliant! Well done my low carb friend.

Thank you, it's nice to be called friend, I don't have any others.

 

[Juicyj]

Sollis, welcome friend

Sorry to hear about the confusion you have been through, you can request a GAD blood test which will measure the antibodies in your blood which are present in type 1 diabetics, however on the basis you have had an episode of dka then this would indicate type 1, although it can occur in type 2 it is apparently rare.

To her honest though, now that your are taking insulin then it's better to focus on making sure you are managing well on this regime. I think a great starting point is to just keep recording as much as you can, spotting trends and patterns is perfect for understanding what is working and what isn't. It sounds like you have a good grip on this already, insulin intake is very much down to the individual, there isn't a golden rule as to how much we should be taking, except watching your results and ensuring you stay within your target range. Try to leave 3-4 hours between food and testing and with your results make sure your DSN is working with you to get it right. It takes time so a little patience too, i always refer to my type 1 as work in progress as it can also change with the seasons, but knowledge is also important, learn as much as you can it really is down to you

 

[Chook]

Thank you, it's nice to be called friend, I don't have any others.

{{{{{ Hug }}}}} .Well you do now.

 

[s.sollis]

{{{{{ Hug }}}}} .Well you do now.

Thank you

 

[s.sollis]

Sollis, welcome friend

Sorry to hear about the confusion you have been through, you can request a GAD blood test which will measure the antibodies in your blood which are present in type 1 diabetics, however on the basis you have had an episode of dka then this would indicate type 1, although it can occur in type 2 it is apparently rare.

To her honest though, now that your are taking insulin then it's better to focus on making sure you are managing well on this regime. I think a great starting point is to just keep recording as much as you can, spotting trends and patterns is perfect for understanding what is working and what isn't. It sounds like you have a good grip on this already, insulin intake is very much down to the individual, there isn't a golden rule as to how much we should be taking, except watching your results and ensuring you stay within your target range. Try to leave 3-4 hours between food and testing and with your results make sure your DSN is working with you to get it right. It takes time so a little patience too, i always refer to my type 1 as work in progress as it can also change with the seasons, but knowledge is also important, learn as much as you can it really is down to you

Thank you, I just completed a food diary for a week so have got to send that to my nurse tomorrow. I'm just writing everything down at the moment and trying to do as much research as possible. I'm glad I've found this website although my nurse says it's not very helpful, I think it's great. I spose I've always had an unhealthy relationship with food, either bingeing or not at all. And it was only when I got ill at new years that I've begun to start taking this seriously. I never want to feel that ill ever again!! I know it's gonna take time but I'm hoping with lots of support and trying out some yummy recipes from the low carb forum I will get there in the end.

 

[BooJewels]

Good evening. I have several thoughts bouncing round my head that this thread has brought to mind, so they might come out in a haphazard way, so I'll just note them as I think of them in the hope that something might prove food for thought.

If you don't know if you're T1 or T2 it does sort of complicate things, as you really should know as they're managed differently. The idea that a nurse is doubting the diagnosis of a doctor concerns me a smidge, as they can't possibly manage you properly whilst that's a source of conflict.

You mention your BGs ranging from 7 to 23 and that you're not sure what dose of insulin to take and that the nurse said to lower it. That's perhaps not as daft as it sounds - especially if you may be a T2 - or at least that the nurse thinks you are, thereby informing her decisions. Bear with me and I'll explain.

I have recently been through a period of instability with my BG and whilst I'm improving on a new regimen and very gradually titrating the dose up (so BG still a bit high overall until I get to a more final dose), I did go through a period of a month or more where my BG was wildly erratic - hypo one minute, upper teens the next measurement. Some could be explained by hypo treatment, but I was rebounding back and forth several times during the day - and it was because I was on too much insulin - or at least the profiles of the ones I was on were lasting longer in my system than expected, causing an overlap of doses. I actually stabilised and went lower overall when I stopped insulin completely for a few days to allow it to get out of my system. So her reducing your insulin might be because she's seeing the same sort of rebound effect with your own numbers. My numbers are more stable today than they were a month ago and I'm on about half the insulin by dose, but the profiles and balance between rapid and long lasting suits me better - I'm now on different insulins taken at different times.

When I look back through my numbers for the last year, every time I went a bit wild in the range of my numbers, we reduced dose and it settled - as I was gradually honing my diet and losing weight I needed to reduce dose several times.

There are ways to calculate your likely insulin for both T1s and T2s, but they differ, as you can imagine. The earlier posters in the thread can advise you better on basal testing and carb counting for a T1 regime and there are ways to work out a likely dose for a T2 based on averaging earlier readings over several days and tweaking doses accordingly. But really your medics should be sorting this for you. But perhaps they need to decide what flavour of diabetic you are first and there are of course more than just 1 and 2!

One of the things I find really useful is to keep good records of my numbers in a format in which I can see the patterns. In my case I use a basic app to record them in that gives me the numbers in a tabular format - so I can see all my pre-lunch readings in the same column etc.etc. and they're also all shown in a graph, so I can see trends and the range of the readings. So recording your readings in a format that will allow you to assess patterns will be useful for both yourself and your HCPs. I would suggest that some time spent looking carefully at the numbers might give you some clues.

 

[s.sollis]

Good evening. I have several thoughts bouncing round my head that this thread has brought to mind, so they might come out in a haphazard way, so I'll just note them as I think of them in the hope that something might prove food for thought.

If you don't know if you're T1 or T2 it does sort of complicate things, as you really should know as they're managed differently. The idea that a nurse is doubting the diagnosis of a doctor concerns me a smidge, as they can't possibly manage you properly whilst that's a source of conflict.

You mention your BGs ranging from 7 to 23 and that you're not sure what dose of insulin to take and that the nurse said to lower it. That's perhaps not as daft as it sounds - especially if you may be a T2 - or at least that the nurse thinks you are, thereby informing her decisions. Bear with me and I'll explain.

I have recently been through a period of instability with my BG and whilst I'm improving on a new regimen and very gradually titrating the dose up (so BG still a bit high overall until I get to a more final dose), I did go through a period of a month or more where my BG was wildly erratic - hypo one minute, upper teens the next measurement. Some could be explained by hypo treatment, but I was rebounding back and forth several times during the day - and it was because I was on too much insulin - or at least the profiles of the ones I was on were lasting longer in my system than expected, causing an overlap of doses. I actually stabilised and went lower overall when I stopped insulin completely for a few days to allow it to get out of my system. So her reducing your insulin might be because she's seeing the same sort of rebound effect with your own numbers. My numbers are more stable today than they were a month ago and I'm on about half the insulin by dose, but the profiles and balance between rapid and long lasting suits me better - I'm now on different insulins taken at different times.

When I look back through my numbers for the last year, every time I went a bit wild in the range of my numbers, we reduced dose and it settled - as I was gradually honing my diet and losing weight I needed to reduce dose several times.

There are ways to calculate your likely insulin for both T1s and T2s, but they differ, as you can imagine. The earlier posters in the thread can advise you better on basal testing and carb counting for a T1 regime and there are ways to work out a likely dose for a T2 based on averaging earlier readings over several days and tweaking doses accordingly. But really your medics should be sorting this for you. But perhaps they need to decide what flavour of diabetic you are first and there are of course more than just 1 and 2!

One of the things I find really useful is to keep good records of my numbers in a format in which I can see the patterns. In my case I use a basic app to record them in that gives me the numbers in a tabular format - so I can see all my pre-lunch readings in the same column etc.etc. and they're also all shown in a graph, so I can see trends and the range of the readings. So recording your readings in a format that will allow you to assess patterns will be useful for both yourself and your HCPs. I would suggest that some time spent looking carefully at the numbers might give you some clues.

Thank you

 

[tim2000s]

@s.sollis Have you been given C-Peptide or Autoantibody tests? If not I'd suggest that you ask for these as soon as possible. the combination of the two should make it much clearer as to what type of diabetes you have.

 

[Kyi]

Hi sollis,
Congrats on starting a thread. Your experiences with food is probably a lot of your problems. You have to tackle the binge eating/non eating. Im a bit like that too. I can be good for weeks but then really really binge. The trouble with binge eating is the glucose will stay in your blood for a long time while the insulin tries to tackle it. I can range from my normal 1300 calories to 5000 calories a day when I binge. Im trying to lose weight but have become a yo yo lose 8lb gain it back in a day. I am trying really hard not to do this and so far seem to be wining. (down 10lb between Jan/feb). The key to not bingeing is to not starve. The too few calories trigger your must eat binge fest. Monitoring my carbohydrates is definately one of the best ways Ive found not to binge, I have cut out potatoes, rice, and any wheat. This is my personal choice. I am seeing a NHS dietician but they are still selling the idea of the well being plate and recommending 1/4 of the plate needs to be carbohydrates. Once you get your head around low carbohydrates it does get easier. Try to jazz up your food with spices. Have low carb vegs to fill you up. I cook all my meals from scratch and have cut out any manufactured package meals. The spices are the key to making your food not taste boring. Always have prepared food ready for those days that you do not feel like cooking. I have standby emergency soup in my fridge that I can just pour into a bowl and nuke to heat. Try to start meal planning. This helped me alot. If you know what you are going to eat you are less likely to binge. Once your food intake is steady your blood glucose may steady. I also recommend keeping a food diary and stick with it even you have binged that day. It helps track how often you are doing it so you can think about why you do it. This is how I found out I binge with carbs and starvation. I could see the pattern. I use myfitnesspal to track my foods and the graphs to see when I go over my limits. I saw that before I binge my calories dropped. Feel free to pm me any time.

 

[micksmixxx]

Have another {{{{{hug}}}}}, s.sollis, my young friend.

You'll find that the vast majority of people on here will be very friendly towards you, and can be counted on to offer you support ... be that moral support.

As has already been stated, noblehead has offered two very worthwhile websites for you to take a look at, and as tim2000s has indicated, C-peptide and Autoantibody tests are what are required. It's the ONLY way to be absolutely sure whether you're a type 1 or a type 2. To be frank with you ... if you don't mind me changing my name for a second ... I'm more than surprised that your DSN (Diabetes Specialist Nurse) hasn't requested that these tests be carried out.

 

[mo53]

Hello @s.sollis wow there is some excellent information on your thread. It sounds as though you could do with a doctors appointment where you explain the problem of the hospital saying you are type 1 and dnurse type 2 and requesting the two tests c-peptide and autoantibody . What do you think?