I need help!

[elfar723]

I'm 26 years now and have been diagnosed with Type 1 diabetes nearly 3 years ago. I was told that the hypos & hypers are due to the honeymoon period (my body adjusting to insulin).
After 3 years, I am still having hypers & hypos. I constantly check my glucose (up to 10 times a day), I'm on Lantus and NovoRapid which I have learnt to use to properly to adjust my levels, I'm always carb counting, avoid any type of 'extra' snacks (even though I'm starving) and I keep my food diary.
Seriously, I don't know what else to do. If I take breakfast paired with NovoRapid, till noon I have a hypo, if I have something light at around 10 am, my levels always reach 12-16 mmol/L by noon! If I skip breakfast and just take black coffee, my glucose still reaches 12-16 mmol/L (without eating anything). Same goes with every other meal. My fasting is usually very high too around 9-12 mmol/L but at night I'm afraid of having it lower than 9 mmol/L as I have experienced severe hypos at night (which terrifies me).
I have tried splitting lantus, still didn't work. I'm worried I'll never get it under control and I'm really afraid of other complications or far worse amputation!

 

[himtoo]

Hi there elfar723

welcome to the forum

it sounds as though you are having a tough time of it.
it would be really helpful to all the lovely people who will come along to offer some support if we could get an idea of what foods and quantities you are eating.

one of the first things I would suggest doing is to basal test to make sure your lantus is set at the right level.

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

This states for a pump, but it is the same technique for injected insulin.

PS -- what do your Diabetic care team recommend to assist you ??

 

[elfar723]

Thank you very much for your reply!

I will definitely take the basal test to check Lantus.

As for foods, I eat a regular Mediterranean Cuisine, mostly based on meat, potatoes and pasta. However, I do carb count and try to take between 60-70 g of carb at lunch, while at dinner normally a salad with 4 slices of bread, so 40-60g of carbs. I do not eat a lot of vegetables (which would solve starvation, I guess) and very often opt for cheese and chicken.

I completely avoid snacks. I just reintegrated breakfast as I used to skip it, but it does seem to affect my lunch result (cos I need to take NovoRapid, thus decreasing the hyper). However, I seem to have a hypo every other day when I take breakfast.
Then I have lunch (usually having around 30-40 g of carbs in potatoes, around 70g of pasta or 70 g of dough) and after that, unless its on the lower side I skip another snack and have dinner as stated above.

I do drink a lot of diet Pepsi with meals, would you avoid it?

 

[azure]

Hi @elfar723

It sounds like you may need to alter your insulin a bit - maybe amounts, maybe timings, maybe both. Do you test your blood sugar after meals?

 

[elfar723]

yes definitely and to my surprise (and a huge dilemma for me)
for example:

I prepare a lasagne dish, then I split it in 2 portions to eat on 2 consecutive days.

The result of my glucose (even if I take the same insulin and its at the same level on both days) the after meal reading is ALWAYS different! It never follows a pattern, be it lasagne, be it rice, potatoes, bread, whatever it is, if its the same meal, it never gives me the same reading with same meal! It's so frustrating!

 

[azure]

That sounds very frustrating indeed! My blood sugar does that sometimes (for no reason) but most of the time my after meal results are in the same rough range. I do stress though that diabetes is a peculiar thing and results can vary a surprising amount. This shocked me when I was first diagnosed as I'd assumed you took your insulin dose and everything was fine. Sadly not!

If you keep everything very controlled and the same for a meal, eg your lasagne, and inject at the same time in advance of your meal, eat the same amount, take the same amount of exercise, then it does sound like your blood sugars are on a bit of a rollercoaster.

Have you looked into the idea of an insulin pump? It may not be something you would consider, but I'm suggesting it as my blood sugars became much smoother on a pump, with less highs and lows.

The other thing you could try, if it suited you, was to slightly reduce the amount of carbs you have at a meal. I find that the more carbs I have, the more variable my blood sugar is. That may not be the same for you at all, but you could try to see if there's an optimum amount of carbs for you to eat.

 

[elfar723]

Hmm...where I live, the doctors & nurses suspected that the insulin pump might be a good idea for me however since here there are just a handful of pump users, and at my hospital I would be the single user, we opted out of the idea out of fear that if it is ever damaged or insulin is not getting through, no one would be able to help me.
Other than that, I'm not really into the whole insulin pump idea, it scares me to have a needle injected in me all the time, what if it gets infected?

My nutritionist set a 20 g carb snack target and a 60 g carb main meal target with breakfast at 40g carb. I try to stick to it, but since I am hungry most of the time (and questionably, gaining weight too now due to reintegrating breakfast) I do tend to go to 70 rather than 60. I guess I'll try to go back to 60 and see how it goes. Thank you very much for your time It's slightly better after talking to other controlled diabetics.

 

[Natalie1974]

I've noticed a few people seem to report problems like this with Lantus...I know I didn't get on with it too well...maybe it's worth seeing if you can switch to Levemir?

 

[elfar723]

Good to know! I'll speak to my doctor! Thanks!!

 

[noblehead]

Hi @elfar723 and welcome to the forum

I would do as @himtoo suggests and start off with some basal tests, once you get that right you can then look at your I:C ratio's and work from there. Good luck and don't get disheartened.

 

[donnellysdogs]

Agree with basal testing...
Don't despair though... Its a two stage thing really. Hospitals don't really give enough advice on basal testing. When you do that you can sort that out first.
Then get your bolus's sorted.

You'll get there....

 

[elfar723]

Yes I'm definitely trying basal testing. Never done it before to be honest. Doctor always worked out insulin for me.

I'm interested in a sort of boot camp for diabetics, maybe doctors can follow patterns and help me choose right foods, does anyone know if this exists? I had heard of the Mayo clinic but still don't know what it is.

 

[noblehead]

Yes I'm definitely trying basal testing. Never done it before to be honest. Doctor always worked out insulin for me.

I'm interested in a sort of boot camp for diabetics, maybe doctors can follow patterns and help me choose right foods, does anyone know if this exists? I had heard of the Mayo clinic but still don't know what it is.

There's the DAFNE course which covers the basics like carb counting, working out insulin-to-carb ratio's and getting the basal dose right, it also looks at other aspects of type 1 management such as the Sick Day Rules which you need to know about when unwell.

 

[azure]

Hmm...where I live, the doctors & nurses suspected that the insulin pump might be a good idea for me however since here there are just a handful of pump users, and at my hospital I would be the single user, we opted out of the idea out of fear that if it is ever damaged or insulin is not getting through, no one would be able to help me.
Other than that, I'm not really into the whole insulin pump idea, it scares me to have a needle injected in me all the time, what if it gets infected?

My nutritionist set a 20 g carb snack target and a 60 g carb main meal target with breakfast at 40g carb. I try to stick to it, but since I am hungry most of the time (and questionably, gaining weight too now due to reintegrating breakfast) I do tend to go to 70 rather than 60. I guess I'll try to go back to 60 and see how it goes. Thank you very much for your time It's slightly better after talking to other controlled diabetics.

I resisted the idea of a pump for ages. I thought it would imprison me, but actually it's given me a huge amount of freedom, aswell as better physical and emotional health because my sugars aren't swinging up and diwn all the time. I was one of the first in my area to get a pump, but my DSN had training in advance of me getting the pump and she was always most helpful. There are also helplines from the pump manufacturers, and you're told very clearly what to do if you have a problem. The pumps have alarms to alert you too, eg mine sounded this morning to tell me I only had 20units of insulin left in my cartridge. That was fine though as I knew that and am going to change it today. The alarm was just an extra reminder.

You can use metal needles with pumps, but they're very short. I have a metal needle at the moment and its only 6mm. I can't feel it in me at all, and I'm quite active. I've never had an infection. You change them regularly. If you don't like the idea of metal needles, there are also Teflon (plastic) cannulas

Pumps aren't for everyone, but they can be a real help to many people so it's akways good to consider if it's for you. I'd also add that I have a quite big Dawn Phenomen, where my blood sugar rises in the morning even if I don't eat (you mentioned a similar problem). The pump has allowed me to basically get rid of this so I no longer have that rise. I got my pump due to awful nocturnal hypos, and it's solved that problem wonderfully

The carb counting you describe is a set regime like the one I was put in when I was first diagnosed - eat so much carbs at this meal, so much carbs at that meal, etc. However, that's horribly inflexible. After a few months of that, I changed to eating a variety of carb amounts in my meals and adjusting my insulin dose accordingly. It gives me more freedom and means I'm not eating carbs to 'feed my insulin'. That might be something you could discuss with your team.

You mention hunger too. I used to be starving when I was first diagnosed! : D I used to never feel full and think about food a lot. Changing to the carb counting method I mentioned above has mainly got rid of my hunger and allowed me to eat normally. I also lost weight when I did this.

I hope that helps Read the advice people put here, talk to your team, and see what suits you as an individual.

 

[elfar723]

There's the DAFNE course which covers the basics like carb counting, working out insulin-to-carb ratio's and getting the basal dose right, it also looks at other aspects of type 1 management such as the Sick Day Rules which you need to know about when unwell.

Thanks a lot for your help! I appreciate your kind words!

 

[elfar723]

I resisted the idea of a pump for ages. I thought it would imprison me, but actually it's given me a huge amount of freedom, aswell as better physical and emotional health because my sugars aren't swinging up and diwn all the time. I was one of the first in my area to get a pump, but my DSN had training in advance of me getting the pump and she was always most helpful. There are also helplines from the pump manufacturers, and you're told very clearly what to do if you have a problem. The pumps have alarms to alert you too, eg mine sounded this morning to tell me I only had 20units of insulin left in my cartridge. That was fine though as I knew that and am going to change it today. The alarm was just an extra reminder.

You can use metal needles with pumps, but they're very short. I have a metal needle at the moment and its only 6mm. I can't feel it in me at all, and I'm quite active. I've never had an infection. You change them regularly. If you don't like the idea of metal needles, there are also Teflon (plastic) cannulas

Pumps aren't for everyone, but they can be a real help to many people so it's akways good to consider if it's for you. I'd also add that I have a quite big Dawn Phenomen, where my blood sugar rises in the morning even if I don't eat (you mentioned a similar problem). The pump has allowed me to basically get rid of this so I no longer have that rise. I got my pump due to awful nocturnal hypos, and it's solved that problem wonderfully

The carb counting you describe is a set regime like the one I was put in when I was first diagnosed - eat so much carbs at this meal, so much carbs at that meal, etc. However, that's horribly inflexible. After a few months of that, I changed to eating a variety of carb amounts in my meals and adjusting my insulin dose accordingly. It gives me more freedom and means I'm not eating carbs to 'feed my insulin'. That might be something you could discuss with your team.

You mention hunger too. I used to be starving when I was first diagnosed! : D I used to never feel full and think about food a lot. Changing to the carb counting method I mentioned above has mainly got rid of my hunger and allowed me to eat normally. I also lost weight when I did this.

I hope that helps Read the advice people put here, talk to your team, and see what suits you as an individual.

@azure, thank you for your thorough help. I know, I think about food all the time! I constantly count the hours for my next meal!
As for the pump, I would definitely be interested (since I'm out of options and no one believes I am still uncontrolled) The doctors keep telling me I am doing everything right with meals and medication but that I must lower my sugars. But to be honest I'm not really keen on trying the pump when on diagnoses I was told to eat only vegetables, I used to be on Insulatard and Actrapid (and they gave me all the wrong information) and only decided to put me on Lantun after a year. My local health team is very inexperienced with Type 1 and they do not seem to have any other patients with my problems.

 

[Daibell]

Hi. Your carb intake is a bit on the high side and perhaps not spread out enough during the day which may be important with your unpredictable blood sugar. Yes, Levemir overall is slightly better than Lantus but doesn't last the full 24 hours. It's now the preferred Basal according to NICE; might be worth a try?

 

[azure]

Do you see a consultant? Although my local doctor doesn't know that much about Tyoe 1, my hospital team are very good and have been really helpful.

I've also done a lot of research myself though over the years. I think with a chronic medical condition like diabetes that you have to live with day in day out, often we become our own expert to an extent. After all, you live with your diabetes 24 hours a day.

I hope you get things sorted

 

[elfar723]

Yes I actually do see a consultant and the team there is really good. They've tried several methods on me, which all seem to fail. I do hope I get it all sorted out though because it is very tiring at this point.
I guess I'll continue counting and try the basal for now.

Thanks a lot everyone, for all your help!

 

[donnellysdogs]

Yes I actually do see a consultant and the team there is really good. They've tried several methods on me, which all seem to fail. I do hope I get it all sorted out though because it is very tiring at this point.
I guess I'll continue counting and try the basal for now.

Thanks a lot everyone, for all your help!

Just to let you know... Pump consultants and the nurses in the two jospitals I have had only deal with pump patients. They specialise. Sure my consultant does other things out of pump clinics but you would be with someone that isn't a try this MDI consultant. Pump consultants and nurses are much more specialised with their knowledge on pumps...